Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Kathy, After I started the injections of MTX, my periods just stopped. I went to my gyn and they took blood tests that showed my hormones weren't dropping, so they didn't think I was going through menopause. I was 47. Although my doctor insisted that the mtx wasn't responsible, I found information online that said mtx can cause absence of a period. Sorry you're having such a bad day. I hope tomorrow is better. a > didn't i just read recently one of the members having troubles with her > period while on mtx?? i have not had a period in 2 years. i was told it was > because > of my birth control. yesterday i had a big screaming fit. could not control > myself. today i started my period. i was at work, was on the phone with my > chiropractor's office and told them i had to hang up because i was going to > cry. > i went to the bathroom and was crying and shaking for about 10 minutes. my pcp > thinks i should be seen. of coarse they do not have contract with my > insurance anymore. i called my rheumi and no response, my gyne will see me in > a week. > kathy in il > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 thanks paula, kinda like my itching problem. they don't want to admit is from it. kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 she said folic acid could always be added, but not necessarily needed. kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2003 Report Share Posted May 23, 2003 I did Kathy. Had been through menopause for YEARS. It was very pale/watery, but all the same, a period! The OBGYN did every test! She was the one who got upset because the RA doc said THAT was NOT a " side effect of MTX " ... My OBGYN said to me, " What does he think MTX is USED FOR! It is the " abortion drug! " But to rule out, she did sonagrams, uterus biopsy... the works! Because of the jerk Doctor I went through HELL as I could not do the " Valium drip " they give for sedation in a Uterus Biopsy... and had to do it very AWARE! Yeow! Results of it all? I HAD gone through menopause YEARS before... and the other tests proved also... could have been only the MTX. (My gums had also been bleeding, and the RA doc also said THAT was NOT a side effect of MTX!) Susie kringlemom@... wrote: > didn't i just read recently one of the members having troubles with > her > period while on mtx?? i have not had a period in 2 years. i was told > it was because > of my birth control. yesterday i had a big screaming fit. could not > control > myself. today i started my period. i was at work, was on the phone > with my > chiropractor's office and told them i had to hang up because i was > going to cry. > i went to the bathroom and was crying and shaking for about 10 > minutes. my pcp > thinks i should be seen. of coarse they do not have contract with my > insurance anymore. i called my rheumi and no response, my gyne will > see me in a week. > kathy in il > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 thanks susie, i ill talk to my gyne 6/17. i can't see a dr until then. i hope i can get her to understand my fears instead of just writing them off. my rheumi said she was out of state and when she got my pages they were the wrong #. since she was out of state, she didn't have access to her files. she then put my lack of mtx on the pharmacy saying they should have found it for me and told me where to get it. it did seem very strange i didn't get a call from her. it was not like her. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 In a message dated 8/12/2003 12:00:19 PM Eastern Daylight Time, missionblondie@... writes: > i'm the same as you - symtoms are not consistent each week - fatigue > is always there for about 5 days - yes, the truck/train analogy is > bang on - but one week it didn't happen until day 2 - leading me to > think i had adjusted and then out of nowhere it smacked me right in > the face the next day - and i was 5 miles from home .... other > symptoms as well, like indigestion, nausea sometimes first thing in > the morning, other times not - sometimes headachy for 2 days, others > not... go figure - if it was consistent at least you'd be able to be > prepared... Only think I can suggest here is do the injectable. I switched to that and all the other side effects went away. I was in total brain fog for 2 - 3 days after taking the MTX in pill form, but didn't get any of that with the injectable. Smile, Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 I'd like to know as well although I think I know the answer. Also, for those who do have side effects with the MTX, are they always the same every week. I don't seem to react the same way each week that I take it. Sometimes I'm o.k. Sometimes I feel like a train hit me head on then the next week I might have problems with my mouth being irritated. Seems like I never know what to expect! My Dr. is ready to move to Enbrel and I've been holding off. Does Enbrel cause the fatigue problems like MTX? Debbie > Thanks Eileen and good luck with your doc tomorrow (today?). The > queasy feeling I had yesterday is gone thank goodness and you are > right, it was no worse than morning sickness (for me). > > For all the experienced MTX people, my question is how long am I > going to feel sooooooooooo tired? > > have a great day..... > > > > [Ed. Note: Ummm, I think you'll regret having asked that question , because you may not like the answer. :-( Ron] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 Hi debbie, i'm the same as you - symtoms are not consistent each week - fatigue is always there for about 5 days - yes, the truck/train analogy is bang on - but one week it didn't happen until day 2 - leading me to think i had adjusted and then out of nowhere it smacked me right in the face the next day - and i was 5 miles from home .... other symptoms as well, like indigestion, nausea sometimes first thing in the morning, other times not - sometimes headachy for 2 days, others not... go figure - if it was consistent at least you'd be able to be prepared... karen > > Thanks Eileen and good luck with your doc tomorrow (today?). The > > queasy feeling I had yesterday is gone thank goodness and you are > > right, it was no worse than morning sickness (for me). > > > > For all the experienced MTX people, my question is how long am I > > going to feel sooooooooooo tired? > > > > have a great day..... > > > > > > > > [Ed. Note: Ummm, I think you'll regret having asked that question > , because you may not like the answer. :-( Ron] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 Thanks . I was beginning to think it was all in my head! It's very frustrating thing to deal with. Debbie > > > Thanks Eileen and good luck with your doc tomorrow (today?). The > > > queasy feeling I had yesterday is gone thank goodness and you are > > > right, it was no worse than morning sickness (for me). > > > > > > For all the experienced MTX people, my question is how long am I > > > going to feel sooooooooooo tired? > > > > > > have a great day..... > > > > > > > > > > > > [Ed. Note: Ummm, I think you'll regret having asked that question > > , because you may not like the answer. :-( Ron] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 Brain fog??? no kidding... it's day 8 since i took my last 7.5 mg dose... just got back from little town where i went to pick up a few staples. asked teller to give me some extra cash. started walking away without it. she reminded me so i took the change, left the $20 on the counter and closed my wallet. noticed what i had done so put the bill in my wallet and then walked away without my groceries! she had to call me back for them too - LOL! just the drive in (8 minutes) and the half hour or so there simply exhausted me - had other errands but decided - heck, what's the panic - tomorrow will do... i feel about 106 years old... moving like a little old lady - laughed at the post a moment ago about stress. i'm so relaxed i'm almost falling off my chair. rebecca - bet you can relate... hope you all giggled a bit - ) karen > In a message dated 8/12/2003 12:00:19 PM Eastern Daylight Time, > missionblondie@y... writes: > > > i'm the same as you - symtoms are not consistent each week - fatigue > > is always there for about 5 days - yes, the truck/train analogy is > > bang on - but one week it didn't happen until day 2 - leading me to > > think i had adjusted and then out of nowhere it smacked me right in > > the face the next day - and i was 5 miles from home .... other > > symptoms as well, like indigestion, nausea sometimes first thing in > > the morning, other times not - sometimes headachy for 2 days, others > > not... go figure - if it was consistent at least you'd be able to be > > prepared... > > Only think I can suggest here is do the injectable. I switched to that and > all the other side effects went away. I was in total brain fog for 2 - 3 days > after taking the MTX in pill form, but didn't get any of that with the > injectable. > > Smile, > Becky > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 not at all, Debbie. any time - just remember, none of this is in our heads - small consulation as that may be at times... karen > > > > Thanks Eileen and good luck with your doc tomorrow (today?). > The > > > > queasy feeling I had yesterday is gone thank goodness and you > are > > > > right, it was no worse than morning sickness (for me). > > > > > > > > For all the experienced MTX people, my question is how long am > I > > > > going to feel sooooooooooo tired? > > > > > > > > have a great day..... > > > > > > > > > > > > > > > > [Ed. Note: Ummm, I think you'll regret having asked that > question > > > , because you may not like the answer. :-( Ron] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 In a message dated 8/12/2003 9:43:04 AM Eastern Daylight Time, CARBEN1@... writes: > The > queasy feeling I had yesterday is gone thank goodness and you are > right, it was no worse than morning sickness (for me). > > For all the experienced MTX people, my question is how long am I > going to feel sooooooooooo tired? Can't they give you something for the queasiness? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 In a message dated 8/12/2003 8:19:37 PM Eastern Daylight Time, missionblondie@... writes: > ... i feel about 106 years old... moving like a little old lady - > laughed at the post a moment ago about stress. i'm so relaxed i'm > almost falling off my chair. rebecca - bet you can relate... > I have that and haven't even started the mtx yet. My PA is acting up this week because I went off the Enbrel and I have noticed the brain fog is much worse. I feel like I am in slow motion. I think I will go back on it tomorrow. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 OXBastetXO@... wrote: " Only think I can suggest here is do the injectable. I switched to that and all the other side effects went away. I was in total brain fog for 2 - 3 days after taking the MTX in pill form, but didn't get any of that with the injectable. " I can vouch for that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 LOL! That sounds like something I would do! Jo n Tue, 12 Aug 2003 22:32:16 -0000, <missionblondie@...> wrote: > Brain fog??? no kidding... it's day 8 since i took my last 7.5 mg dose... > just got back from little town where i went to pick up a few staples. > asked teller to give me some extra cash. started walking away without > it. she reminded me so i took the change, left the $20 on the counter > and closed my wallet. noticed what i had done so put the bill in my > wallet and then walked away without my groceries! she had to call me > back for them too - LOL! just the drive in (8 minutes) and the half hour > or so there simply exhausted me - had other errands but decided - heck, > what's the panic - tomorrow will do... i feel about 106 years old... > moving like a little old lady - laughed at the post a moment ago about > stress. i'm so relaxed i'm almost falling off my chair. rebecca - bet > you can relate... > > hope you all giggled a bit - ) > > karen > > >> In a message dated 8/12/2003 12:00:19 PM Eastern Daylight Time, >> missionblondie@y... writes: >> >> > i'm the same as you - symtoms are not consistent each week - > fatigue >> > is always there for about 5 days - yes, the truck/train analogy > is >> > bang on - but one week it didn't happen until day 2 - leading me > to >> > think i had adjusted and then out of nowhere it smacked me right > in >> > the face the next day - and i was 5 miles from home .... other > >> symptoms as well, like indigestion, nausea sometimes first thing > in >> > the morning, other times not - sometimes headachy for 2 days, > others >> > not... go figure - if it was consistent at least you'd be able to > be >> > prepared... >> >> Only think I can suggest here is do the injectable. I switched to > that and >> all the other side effects went away. I was in total brain fog for > 2 - 3 days >> after taking the MTX in pill form, but didn't get any of that with > the >> injectable. >> >> Smile, >> Becky >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2003 Report Share Posted November 10, 2003 Dear Sherry, I'm sort of new to this group, but I sure hate to read or hear about anyone in pain. I guess it's because I have had so much of it in the past 5 years. I was a lot like you at first with the pain pills and not wanting to get addicted to them. I found out the hard way, that you simply can't worry about that when you are in so much pain and suffering so much. First of all (I'm in pain management now and have been for almost 3 years) my pain specialist told me rarely do people in severe or chronic pain get addicted to pain killers. He said that some of the time they don't ever experience a high or the lows that most people would feel on pain pills because the pain we are in simply is so strong that all the medication ends up trying to work on the pain. If that makes sense. It made more sense when he explained it. Also if you are so bad that you can't walk, then taking pain medication is going to help you more than hurt you. Not moving is hard on your muscles and joints and things seem to get worse the more you sit still and don't move. I don't know if hydracodine is the best medication for the pain you have right now, but if it's what they have given you, then I sure would take it. Please don't think I'm a pain pill popper. I hated it when I ended up in pain management and felt like a failure. They made me see that I could manage my illness so much easier if I could control the pain, and it also helps the depression ease up. I never thought I would be on the pain medication I'm on now or that I would still be in pain management after 3years, but I also don't think I would have made it without them. I was to the point where life wasn't worth living and when you reach that point, worrying about becoming addicted to a pain pill is sort of silly. I guess I reached the point where I would rather live with my pain pills, then die without them. Not everyone has pain as severe as I do with their PA, but I went for probably 6 years without being diagnosed and now several of my joints are almost destroyed, I have neuropathy from the inflammation in my hands and feet, I have fibromyalgia and a pain syndrome called RSD that hurts most of the time, and last week I found out I was diagnosed with congestive heart failure. I'm trying to stay positive and live my life to the fullest each day. It isn't easy, but I love my kids and my husband and they all keep me going. I'm only 48 and I want to stay around a little longer yet. Don't suffer if you don't have too. Call your doctor and see what else can be done to help you. I wouldn't wait until January, for the Enbrel. I also waited a long time for Enbrel, and then couldn't take it due to a severe allergic reaction. So you have to get by now and not hope things will be fine in January. Well I went on more than I planned too, but I hate to hear of anyone suffering if they don't have too. Good luck and I hope your doctor can help you. Fran in Florida [Editor's Note: Fran, I agree whole-heartedly with your advice to Sherry about the pain meds. I mentioned to her the point about legitimate serious pain people not getting addicted (habituated? yes...Addicted? No...). I use the metaphor of the Tin Man and Dorothy's Oil Can, from the Wizard of Oz. The proper pain meds are the oil which allows us to go about our daily business, and have some sort of normal life. The Tin Man had rust, our rust was the pain. Sherry, seeing a pain management doctor/clinic would probably be a good idea. D.] [Fran Mishler] [ ] MTX Hello every one, Ya'll might not remember me but I posted a few questions back a few months ago. I have been away because I am trying not to be depressed about this situation of having psoriatic arthritis. I was finally able to get on MTX and have been gradually uping my dose. Friday I will be taking 20mgs. So far I have not seen much improvement. I am having horrible pain in my spine and neck and right hip. At night my arms hurt so bad I can't sleep and when I do get up in the morning I'm in tears for 45 minutes. I am taking hydrocodone 5/500 every am and try not to take it the rest of the day because I am afraid of getting addicted. I have to wait till January to start on enbrel and dont see my rhuemy until then. Should I call her and let her know how much pain I am in or just suffer. Im so confused. Im also very discouraged because I can hardly walk now with the pain in my right hip that vibrates up my back and I think Im walking sideways also. Some of my family members want me to try to go back to work but I just dont know how I can do that either. I cant even open a door with my hands as swollen as they are and I will loose my medicaid which pays for my rhuemy and my medicine. So is there any advice that any one can give me and may be some encouragement. Thanks Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2003 Report Share Posted November 10, 2003 Sherry, I am sorry you are having such a bad time ... I fully understand cos my PA is flaring big time right now and I've been really miserable. First, I understand your concerns about the pain meds, but from what I understand and my own experience, people who truly need them and follow prescribed dosages aren't as likely to become addicted as others. I don't like taking stronger pain meds, but it becomes a choice between quality of life and reducing risks of addiction. You may want to ask for the stronger pain meds until your PA meds are working and you can start on Enbrel or something similar. Hopefully, you won't need to be on them all that long. Secondly, as for working, your priority is your healthcare. To try to work then have to quit and go back on Medicaid could risk an interruption in your health benefits, and you really don't need that right now. In addition, you need to ensure that you get enough rest for the PA ... the emotional and physical stress of trying to work while you are still in such pain and limited mobility could only end up making the PA worse. Perhaps later it would be more feasible for you to return to work, but please make this decision carefully. You may want to check into seeing an occupational therapist. They can help you evaluate your mobility and accessibility needs, recommend equipment and devices that would help. I hope you feel better soon ... this is a horrible disease to have to live with, but fortunately we have friends in this group to turn to for support. Jo Internet Miniature Pinscher Service: minpinrescue.org Outgoing mail checked daily by Norton Anti-virus 2003. -- [ ] MTX Hello every one, Ya'll might not remember me but I posted a few questions back a few months ago. I have been away because I am trying not to be depressed about this situation of having psoriatic arthritis. I was finally able to get on MTX and have been gradually uping my dose. Friday I will be taking 20mgs. So far I have not seen much improvement. I am having horrible pain in my spine and neck and right hip. At night my arms hurt so bad I can't sleep and when I do get up in the morning I'm in tears for 45 minutes. I am taking hydrocodone 5/500 every am and try not to take it the rest of the day because I am afraid of getting addicted. I have to wait till January to start on enbrel and dont see my rhuemy until then. Should I call her and let her know how much pain I am in or just suffer. Im so confused. Im also very discouraged because I can hardly walk now with the pain in my right hip that vibrates up my back and I think Im walking sideways also. Some of my family members want me to try to go back to work but I just dont know how I can do that either. I cant even open a door with my hands as swollen as they are and I will loose my medicaid which pays for my rhuemy and my medicine. So is there any advice that any one can give me and may be some encouragement. Thanks Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 Dear Sherry: I have been a member of this group for some time, and although my pain is not severe most of the time, I often turn to the group for mental and emotional support. There is comfort in knowing that we are not alone. I am also a Medicaid supervisor in NJ. If you are not sure of returning to work for fear of losing your Medicaid, you should call the local office and speak with a supervisor or administrator who can give you a exact breakdown of what will happen if you go back to work. In some states you can continue to receive benefits in what we call 'transitional medicaid', for a period of time after your return to work. At any rate, knowing the exact facts in your state is better than not knowing. If you need help locating the office in your state, e-mail me and maybe I can help. As far as pain meds, I have a standby of Darvocet for when I have a flair-up. It's not a very potent drug but it does take the edge off. It also affords me a better nights sleep if I'm having a bad night. I am currently on Enbrel and my Rheumy says that they are working on a once a week doseage. She also says not to be discouraged by bad days; Enbrel doesnt stop the flairs, it just tempers them. I also agree with the responses regarding pain meds. You priority is to use that " oil can " .....HOw else are we gonna get back to Kansas! Rick > Hello every one, > Ya'll might not remember me but I posted a few questions back a few > months ago. I have been away because I am trying not to be depressed > about this situation of having psoriatic arthritis. I was finally > able to get on MTX and have been gradually uping my dose. Friday I > will be taking 20mgs. So far I have not seen much improvement. I am > having horrible pain in my spine and neck and right hip. At night my > arms hurt so bad I can't sleep and when I do get up in the morning > I'm in tears for 45 minutes. I am taking hydrocodone 5/500 every am > and try not to take it the rest of the day because I am afraid of > getting addicted. I have to wait till January to start on enbrel and > dont see my rhuemy until then. Should I call her and let her know > how much pain I am in or just suffer. Im so confused. Im also very > discouraged because I can hardly walk now with the pain in my right > hip that vibrates up my back and I think Im walking sideways also. > Some of my family members want me to try to go back to work but I > just dont know how I can do that either. I cant even open a door > with my hands as swollen as they are and I will loose my medicaid > which pays for my rhuemy and my medicine. So is there any advice that > any one can give me and may be some encouragement. Thanks Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 Thanks so much for your feed back. I think you are probably right. I am just very scared but I almost at that point where the pain is taking over my whole being and I need to feel better that is for sure. I was so hoping that I would start getting better with the MTX but I guess its one day at a time isnt it. Well have a great day. Sherry - -- In , " Fran Mishler " <fran@m...> wrote: > Dear Sherry, > > I'm sort of new to this group, but I sure hate to read or hear about anyone > in pain. I guess it's because I have had so much of it in the past 5 years. > I was a lot like you at first with the pain pills and not wanting to get > addicted to them. > > I found out the hard way, that you simply can't worry about that when you > are in so much pain and suffering so much. First of all (I'm in pain > management now and have been for almost 3 years) my pain specialist told me > rarely do people in severe or chronic pain get addicted to pain killers. He > said that some of the time they don't ever experience a high or the lows > that most people would feel on pain pills because the pain we are in simply > is so strong that all the medication ends up trying to work on the pain. If > that makes sense. It made more sense when he explained it. Also if you are > so bad that you can't walk, then taking pain medication is going to help you > more than hurt you. Not moving is hard on your muscles and joints and > things seem to get worse the more you sit still and don't move. > > I don't know if hydracodine is the best medication for the pain you have > right now, but if it's what they have given you, then I sure would take it. > Please don't think I'm a pain pill popper. I hated it when I ended up in > pain management and felt like a failure. They made me see that I could > manage my illness so much easier if I could control the pain, and it also > helps the depression ease up. I never thought I would be on the pain > medication I'm on now or that I would still be in pain management after > 3years, but I also don't think I would have made it without them. > > I was to the point where life wasn't worth living and when you reach that > point, worrying about becoming addicted to a pain pill is sort of silly. I > guess I reached the point where I would rather live with my pain pills, then > die without them. > > Not everyone has pain as severe as I do with their PA, but I went for > probably 6 years without being diagnosed and now several of my joints are > almost destroyed, I have neuropathy from the inflammation in my hands and > feet, I have fibromyalgia and a pain syndrome called RSD that hurts most of > the time, and last week I found out I was diagnosed with congestive heart > failure. I'm trying to stay positive and live my life to the fullest each > day. It isn't easy, but I love my kids and my husband and they all keep me > going. I'm only 48 and I want to stay around a little longer yet. > > Don't suffer if you don't have too. Call your doctor and see what else can > be done to help you. I wouldn't wait until January, for the Enbrel. I also > waited a long time for Enbrel, and then couldn't take it due to a severe > allergic reaction. So you have to get by now and not hope things will be > fine in January. > > Well I went on more than I planned too, but I hate to hear of anyone > suffering if they don't have too. Good luck and I hope your doctor can help > you. > > Fran in Florida > > [Editor's Note: Fran, I agree whole-heartedly with your advice to Sherry about the pain meds. I mentioned to her the point about legitimate serious pain people not getting addicted (habituated? yes...Addicted? No...). > > I use the metaphor of the Tin Man and Dorothy's Oil Can, from the Wizard of Oz. The proper pain meds are the oil which allows us to go about our daily business, and have some sort of normal life. The Tin Man had rust, our rust was the pain. > > Sherry, seeing a pain management doctor/clinic would probably be a good idea. > > D.] > > [Fran Mishler] > [ ] MTX > > > Hello every one, > Ya'll might not remember me but I posted a few questions back a few > months ago. I have been away because I am trying not to be depressed > about this situation of having psoriatic arthritis. I was finally > able to get on MTX and have been gradually uping my dose. Friday I > will be taking 20mgs. So far I have not seen much improvement. I am > having horrible pain in my spine and neck and right hip. At night my > arms hurt so bad I can't sleep and when I do get up in the morning > I'm in tears for 45 minutes. I am taking hydrocodone 5/500 every am > and try not to take it the rest of the day because I am afraid of > getting addicted. I have to wait till January to start on enbrel and > dont see my rhuemy until then. Should I call her and let her know > how much pain I am in or just suffer. Im so confused. Im also very > discouraged because I can hardly walk now with the pain in my right > hip that vibrates up my back and I think Im walking sideways also. > Some of my family members want me to try to go back to work but I > just dont know how I can do that either. I cant even open a door > with my hands as swollen as they are and I will loose my medicaid > which pays for my rhuemy and my medicine. So is there any advice that > any one can give me and may be some encouragement. Thanks Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 Sheryl, DO NOT WAIT and suffer all the while. Get on Enbrel or Remicade now!! I was miserable for a long time and on a downhill slope back in 1998-99. I was never able to tolerate the MTX, was on it for 9 months. My doctor was lobbying all the while to get me on Enbrel. At the time, it was still in clinical studies for PA and not yet approved. But, my Dr. got me on it anyway. I felt improvement within 2 weeks of starting it and had a run of about 2.5-3 years of really good results. In fact, for much of that time, I went without any pain meds. And it cleared up my psoriasis to boot. Sadly, as with all good things, the effectiveness wore off. In mid March, I went off Enbrel to allow for about 6 weeks to clear it all out of my system before going on to Remicade. Remicade did not have the same fast-action results, but by the 4th infusion, I was feeling much better. I go for my usual six-week infusion on Thursday. I think I'll have them check the oil and rotate the tires while I'm there. But seriously, never wait. You have to stay on top of your Dr. and read a lot. They are called Rheumetologists and not Psoriatologists for a reason. In the scheme of chronic diseases, we rate pretty low. Not a lot of us out there. So the Psoriatic info isn't flowing freely to our Dr.'s. Stay on top of them. And fight for relief. You will get it. Sheryl <smilingfrogg@...> wrote: Hello every one, Ya'll might not remember me but I posted a few questions back a few months ago. I have been away because I am trying not to be depressed about this situation of having psoriatic arthritis. I was finally able to get on MTX and have been gradually uping my dose. Friday I will be taking 20mgs. So far I have not seen much improvement. I am having horrible pain in my spine and neck and right hip. At night my arms hurt so bad I can't sleep and when I do get up in the morning I'm in tears for 45 minutes. I am taking hydrocodone 5/500 every am and try not to take it the rest of the day because I am afraid of getting addicted. I have to wait till January to start on enbrel and dont see my rhuemy until then. Should I call her and let her know how much pain I am in or just suffer. Im so confused. Im also very discouraged because I can hardly walk now with the pain in my right hip that vibrates up my back and I think Im walking sideways also. Some of my family members want me to try to go back to work but I just dont know how I can do that either. I cant even open a door with my hands as swollen as they are and I will loose my medicaid which pays for my rhuemy and my medicine. So is there any advice that any one can give me and may be some encouragement. Thanks Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 - > Some of my family members want me to try to go back to work but I > just dont know how I can do that either. I cant even open a door > with my hands as swollen as they are and I will loose my medicaid > which pays for my rhuemy and my medicine. So is there any advice that > any one can give me and may be some encouragement. Thanks Sherry Hi Sherry, Sorry you are having such a bad time of it with the PA. Sounds as if your family just doesn't get it how bad off you are right now . We understand. Having access to Enbrel and other mediations is imperative for you. You can't risk losing those benefits. Our state is starting a new program where disabled people can go back to work and keep their medical benefits. It is connected to the ad campaign with Reeves. Even so-you are not well enough to work right now so make " getting as strong and pain-free as possible " your job. Best Wishes, Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 In a message dated 11/11/2003 8:26:49 AM Eastern Standard Time, fran@... writes: > [Editor's Note: Fran, I agree whole-heartedly with your advice to Sherry > about the pain meds. I mentioned to her the point about legitimate serious pain > people not getting addicted (habituated? yes...Addicted? No...). Hi , I am also afraid of taking too much of my VicodinES. I take one almost every night so I can sleep without a great deal of back pain as well as neck, hip, knees, etc. I keep trying to skip a night and last night I did not take it and had an awful night. I am afraid that I will build a tolerance to it and then it will will not work at all. I think that is why I keep skipping nights because I feel it is better to have a few bad night as long as I can take it again and it will work some nights. any opionions on this??? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 In a message dated 11/11/2003 2:37:20 PM Eastern Standard Time, mlw402 writes: > Even so-you are not well enough to work > right now so make " getting as strong and pain-free as > possible " your > job. Hi Sherry, I agree totally with Marti...it is a full time job to take care of yourself when you are going through a bad time with PA. I went on FMLA for 2 months last year, and have just made the decision to work only 3 days a week...having more time to rest has made all the difference in the world. If you do decide to go back to work, go back very slowly, only adding a few hours per week at a time so that you can slowly see how much work you can tolerate. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2003 Report Share Posted November 14, 2003 Hello All, thanks for all the wonderful advice. I am hoping to start enbrel December 15. I sure hope it works. In my state if you go back to work they completely cut you off immediatly from benifits so all I can do is just keep trying for my disability. I haven't heard back from my ruemy yet on getting more pain med and I like have 15 left so I'm a little scared. I wanted to share an experience I had with my cousin the other day. Let me first explain that she has given me a place to live until I can get disability and she has been feeding me and my 17 year old daughter also. My daughter pays $60 a week to for us to stay here. I sleep on a old metal day bed in the living room. My mornings are quit frightening. So up until just a few days ago I would make funny pain noises when I got out of the bed just to drowned out the pain I guess. Any a few days ago my cousin told me that I am making to much out of my pain and that I need to shut up and grin and bare it. So now when I get up in the morning I have to be quiet and can never say anything about the pain. I feel very angry in the mornings now because I just hurt so darn bad and being able to make noises really helped to releave my anxiety and tension of getting out of bed and starting the day. Anyway, I am trying so hard to keep my wits about me and be happy but I just seem to keep getting smacked in the face so to speak. ] Well thanks for listening to me whine. I'm sure that a few of you have had similar experiences. I just needed to unload. Have a wonderful painless day. Sherry > Hello every one, > Ya'll might not remember me but I posted a few questions back a few > months ago. I have been away because I am trying not to be depressed > about this situation of having psoriatic arthritis. I was finally > able to get on MTX and have been gradually uping my dose. Friday I > will be taking 20mgs. So far I have not seen much improvement. I am > having horrible pain in my spine and neck and right hip. At night my > arms hurt so bad I can't sleep and when I do get up in the morning > I'm in tears for 45 minutes. I am taking hydrocodone 5/500 every am > and try not to take it the rest of the day because I am afraid of > getting addicted. I have to wait till January to start on enbrel and > dont see my rhuemy until then. Should I call her and let her know > how much pain I am in or just suffer. Im so confused. Im also very > discouraged because I can hardly walk now with the pain in my right > hip that vibrates up my back and I think Im walking sideways also. > Some of my family members want me to try to go back to work but I > just dont know how I can do that either. I cant even open a door > with my hands as swollen as they are and I will loose my medicaid > which pays for my rhuemy and my medicine. So is there any advice that > any one can give me and may be some encouragement. Thanks Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 Janet, (Sorry for the delay - had cataract surgery, just back.) When you skip a night and miss sleep that night you are actually risking worsening the pain. Deep sleep is essential to healing. Without that deep sleep anything that has degraded your system since the last good nights sleep is allowed to grow, like the rust that needs the oil. Pain meds are the enablers of that oil. Don't take them just to sleep, if you can sleep well without them, but don't skip them when you are having pain because that's why you have these meds. Wishing all painless sleep, JudiRose > In a message dated 11/11/2003 8:26:49 AM Eastern Standard Time, > fran@m... writes: > > > [Editor's Note: Fran, I agree whole-heartedly with your advice to Sherry > > about the pain meds. I mentioned to her the point about legitimate serious pain > > people not getting addicted (habituated? yes...Addicted? No...). > > Hi , > I am also afraid of taking too much of my VicodinES. I take one almost every > night so I can sleep without a great deal of back pain as well as neck, hip, > knees, etc. I keep trying to skip a night and last night I did not take it > and had an awful night. I am afraid that I will build a tolerance to it and > then it will will not work at all. I think that is why I keep skipping nights > because I feel it is better to have a few bad night as long as I can take it > again and it will work some nights. any opionions on this??? > Janet > > > Quote Link to comment Share on other sites More sharing options...
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