Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Hi Becky and welcome to the group. This will be rambling but part of it might help . Most people with RA never feel bad enough to seek an on-line support group and many who do seek a group then drop out when things improve. What you see in this or any on-line support group is a bunch of worst-case situations. Prednisone helps immensely and rapidly to reduce symptoms but it also causes bone loss, increased appetite, mood swings, high blood pressure, high colesterol, and who knows what else. Anything over 5 mg daily is generally regarded as bad in the long run. I started on 40 mg, a year and a half later I was down to 10 mg, and not I am off except for special needs. I also take Caltrate + D to get calcium and Vitamin D to help compensate for the damage done to me while I was taking Prednisone. Also Prednisone does not stop or slow down permanent joint damage, but Methotrexate does. In addition to traditional Western medicine there are three other ways of treating RA that work for some people: Chinese medicine including acupuncture, diet and nutrition, and antibiotic therapy. The variety of choices almost always provides some hope of success in controlling RA. Methotrexate usually takes about three months after the last dose increase to be fully effective, and sometimes takes longer. There are a number of other drugs that are effective for RA but many of them are quite expensive. Some people take up to 25 mg Methotrexate weekly and if nausea or mouth sores are a problem they often use injections instead of pills. Medicines can have bad side effects but uncontrolled RA can easily have much worse side effects than most medicines. Most sife effects of medications go away fairly quickly when the medicine is stopped. I hope we hear from you again with more questions. God bless. ----- Original Message ----- From: StarsHutch@... Rheumatoid Arthritis Sent: Tuesday, August 31, 2004 6:27 PM Subject: Doing Well Hello everyone,I am still fairly new here and was diagnosed in June of this year, but my symptomsstarted almost a year before that. (Symptoms started at the same time I started going to a chiropractor for a mis-aligned shoulder).I had become quite disabled because of the RA, and the blood test confirmed that I have the RA factor, and my sediment level was and has been high for quite some time. Other than that, there is nothing else wrong with me, except I am carrying a lot of weight. BTW, I am 37 years old.The doctor put me on 15 mg Prednisone right away and I had never felt so good, and 95% of my symptoms disappeared. I was able to resume my previous activities.I started MTX 2 months ago and I really can't tell if it works or not, as I was told to keep taking 10 mg of Prednisone - for now.I may be allergic to the Naproxen Sodium as I havebeen having hives at a higher dose. If I am allergic to Naproxen, that would leave me with absolutely nothing left for me to take, as I am allergic to most pain meds (andantibiotics).Right now I am in a precarious situation and have been taking life one day and one week at a time. I have no idea what's going to happen in the future with this illness and the MTX and Prednisone.I am concerned about the drug success rate and if there are folks with RA who areleading fairly normal lives. Being on this list makes me think that I only have disability and trying new drugs with strange side effects to look forward to.My doctor had told me that I can't stay on Prednisone and that the MTX wouldn'twork as well as Prednisone. It seems like I still know so little about this illness. What's funny is, it took me a while to get into see the Rheumy, but before that, I would wind up at the emergency room with a flare in my left hand and nobody could figure out what was causing it, but they had a lot of guesses!! Any insight or advice would be helpful. Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Hi Becky, I also had strange joint problems for over a year before getting a diagnosis - I was so relieved when someone finally put a name on what I was feeling, and I wasn't crazy! You need to take things one day at a time - that's how it goes. Once you get stabilized, you'll be able to plan a little more in advance, but even then I've learned that it's important to be flexible and willing to change activities based on how you are feeling. It's good to read up and learn all you can about RA. What you'll find is that many people are very well controlled with the various drugs that exist, and lead completely normal lives - even doing quite adventurous and stressful things (running marathons, etc). They don't tend to be the ones who hang around on the web sites though. As for leading a normal life, despite the challenges of RA I've worked full time since I was diagnosed (6 years ago), am married, have a 10 year old son & 2 German Shepards, and do gardening and housework (as little of this as possible though). I take a lot of medications, and have had to drop back to 6 hours / day at work recently. I can't do everything that I used to do, but overall I would say I lead a realitively normal life. (It's all in your definition of normal.) The methotrexate (like many RA drugs) can take up to 3 months or so to work - the docs start you out at lower doses and gradually raise them over time. Part of that is to give you the lowest dose you need, and part of it is to monitor for side effects. Don't give up on it yet. (I think one of the frustrating parts of all of this is how long it can take to tell if something is working) Naproxen is a non-steriodal anti-inflammatoy (NSAID), which helps reduce inflammation and as well helps to reduce pain. There are a large number of drugs in this class, as well as there being a class of -2 inhibitors that do much the same thing. It may take some trial and error, but your doc may be able to find one that works better for you and you're not allergic to. Hang in there, and feel free to ask the group any questions that come to mind. We're all here to help each other! Beth > > Hello everyone, > > I am still fairly new here and was diagnosed in June of this year, but my > symptoms > started almost a year before that. (Symptoms started at the same time I > started going to a chiropractor for a mis-aligned shoulder). > I had become quite disabled because of the RA, and the blood test confirmed > that I have the RA factor, and my sediment level was and has been high for > quite some time. Other than that, there is nothing else wrong with me, except I > am carrying a lot of weight. BTW, I am 37 years old. > > The doctor put me on 15 mg Prednisone right away and I had never felt so > good, and > 95% of my symptoms disappeared. I was able to resume my previous activities. > I started MTX 2 months ago and I really can't tell if it works or not, as I > was told to keep taking 10 mg of Prednisone - for now. > I may be allergic to the Naproxen Sodium as I have > been having hives at a higher dose. If I am allergic to Naproxen, that would > leave me with absolutely nothing left for me to take, as I am allergic to most > pain meds (and > antibiotics). > > Right now I am in a precarious situation and have been taking life one day > and one week at a time. I have no idea what's going to happen in the future with > this illness and the MTX and Prednisone. > I am concerned about the drug success rate and if there are folks with RA who > are > leading fairly normal lives. Being on this list makes me think that I only > have disability and trying new drugs with strange side effects to look forward > to. > My doctor had told me that I can't stay on Prednisone and that the MTX > wouldn't > work as well as Prednisone. > It seems like I still know so little about this illness. What's funny is, it > took me a while to get into see the Rheumy, but before that, I would wind up > at the emergency room with a flare in my left hand and nobody could figure out > what was causing it, but they had a lot of guesses!! > > Any insight or advice would be helpful. > Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 In a message dated 8/31/2004 10:37:07 PM Central Standard Time, hvantuyl@... writes: Hi Becky and welcome to the group. This will be rambling but part of it might help . Most people with RA never feel bad enough to seek an on-line support group and many who do seek a group then drop out when things improve. What you see in this or any on-line support group is a bunch of worst-case situations. Prednisone helps immensely and rapidly to reduce symptoms but it also causes bone loss, increased appetite, mood swings, high blood pressure, high colesterol, and who knows what else. Anything over 5 mg daily is generally regarded as bad in the long run. I started on 40 mg, a year and a half later I was down to 10 mg, and not I am off except for special needs. I also take Caltrate + D to get calcium and Vitamin D to help compensate for the damage done to me while I was taking Prednisone. Also Prednisone does not stop or slow down permanent joint damage, but Methotrexate does. Thank you for the info! I saw the Rheumy today and he upped the MTX to 8 pills a week, upped the folix acid to 2 a day and switched me to Celebrex as the Naproxen Sodium is making me itchy and break out in the hives. I am allergic to just about everything else except Tylenol. Oh yeah, I am still taking 10 mg of Prednisone - for 2 more weeks, then I have to start tapering off again. I am about 95% better than I was, and most of the side effects that I am having are from the Prednisone, except that MTX makes the inside of my mouth sore. Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 95% improvement is great and some people never get that good. I hope that continues or even gets better. The mouth sores are a common side effect of Methotrexate and the Folic Acid is supposed to reduce the side effects. Leucovorin is a relative of Folic Acid and sometimes works better. Also Methotrexate injections are said to have fewer side effects than the pills. When reducing the Prednisone make sure you take it slowly and don't hesitate to go back up to the previous level if things get very bad. Some extra pain is likely when reducing Prednisone and you have to be the judge of what is too much. God bless. ----- Original Message ----- From: StarsHutch@... Rheumatoid Arthritis Sent: Tuesday, September 07, 2004 7:28 PM Subject: Re: Doing Well Thank you for the info! I saw the Rheumy today and he upped the MTX to 8 pills a week, upped the folix acid to 2 a day and switched me to Celebrex as the Naproxen Sodium is making me itchy and break out in the hives. I am allergic to just about everything else except Tylenol. Oh yeah, I am still taking 10 mg of Prednisone - for 2 more weeks, thenI have to start tapering off again. I am about 95% better than I was, and most of the side effects that I am having arefrom the Prednisone, except that MTX makes the inside of my mouth sore.Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2005 Report Share Posted December 10, 2005 wrote: > > Doing quite well on eating cooked meat and cooked low starch veggies > in coconut oil. Off coritsone and other meds.The lemon juice for me is > not good all through the day,only first thing in the morning. I do > quite well on chamomile tea which my ulcer likes. ==>That excellent you are off the cortisone! Very very well done ! > > I think Bee is wonderful to have this group,she has done a lot of work > on educating all of us,but it is only a suggestion. I think everyone > has to decide what to do themselves as Bee doesnt know us all and our > problems. Thank you Bee! ==>You are so very welcome . It's onward and upward!! Lotsa hugs, Bee > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.