Re: MTX, hair thinnig, Tracie UPdate-

[Guest guest]

MTX has made my hair thinner, but no, I've not had it fall out as in going bald. As for having your MD increase it -- all the major studies have shown that 15mg a week is all you need, there hasn't been additional improvement at higher doses with sarcoidosis. For RA and other auto-immune diseases, increased dosage does seem to help.

I know they started me at 7.5 mg a week, and then over the next 2 week, we added ano 2.5 mg up to the 15mg by the 4th week. I've been at that level for 3 yrs now, and because of the Milk Thistle capsules my liver enzymes are fine.

We added Imuran to it initially, but that did shoot up the enzymes, so he switched to Plaq. I've been at 400 mg daily on that for the last several years.

When I continued to have progression in my neuropathy and leg weakness, we added Arava, and that didn't work with my gut. So it went the wayside. It was then that I found the clinical trial for Remicade, and was accepted into the trial 6 mo later.

It was amazing, after the first infusion (I had to fly to LA every 6wks for a year) I was able to open my fist-- and my thumbs had actually frozen to the palm of my hands. Fortunately, one of the jobs that I had for a short while was with a physical therapist, and he had me continue to massage that major ligament/muscle that controls the thumbs-- and low and behold, 2 hrs after the infusion, I got on the plane home, and my hand opened up! And the pain in my spine was gone! So I was sold. Initially the first few infusions gave me the sensation of sucking on a corrided lead pipe-- but then it killed all my tastebuds (except the ones that like sweets and Mexican food) and it's still that way. We don't know that it was the drugs, or if it's the nerves that sarc hits-- but the sense of taste and smell is pretty much history.

As far as "flares"-- what I've experienced is that once I got the combination of meds that worked-- my MTX, Plaq and Remicade- I was very comfortable for several weeks each month. I still have problems with my lymph nodes swelling a few days prior to each infusion, and the bone pain comes back for those few days. But yes, I've experienced a day or two where the pain is a nuisance, but not all consumming. I had previously ended up on Duregesic patches, and was allergic to the adhesive, so that went out the window, so I had to settle for Ora-morph. However, I am a pain pill addict- recovered now for 18yrs- but it still scares the shit out of me, and I do not ever want to have to go back to self-medicating (I was getting meds from 3 different docs, who didn't know anyone else was writting scripts- and pay ing for much of them out of pocket, so the ins

didn't know what was going on)-- I don't recommend this-- you will get yourself into trouble-- but it was what I had to do.

Now with the techniques that I've shared with the group, and the med combo I'm on-- I haven't taken any Oramorph for 10 months.

Anyway, what I've learned is that if I listen to my body, rest when it demands rest- eat right, for the most part, I can still function. I'm able to drive, and only recently have started developing leg weakness in that the neuropathy feels like a turniquet around my left thigh, and from there down it's numb. It starts feeling like I'm walking with a tree trunk swinging from my hip, instead of my leg. The neuro says it's nerve damage from the sarc. I know that if I put my oxygen on-- some of the numbness subsides-- so that tells me that my heart is needing more oxygen when I'm moving around-- and what our body does is take it away from your extremities first, so that your vital organs are supplied.

I also found out that my upper lung lobes are more involved now, and the upper bronchials-- so that my breathing is more compromised. We also found out that I've had a pericardial effusion-- where the fluid around the heart within the pericardial sac that holds the heart and is the electrolyte system to float the heart and regulate heart beats-- became overfilled and has shorted out a spot on the sac-- so it was the same sensation of a heart attack, but since the effusion was on the backside of the heart sac-- it didn't show up on an echocardiogram or as ekg arrthymia. The crisis was over by the time the ekg was done. It was a cardiolyte stress test and scan that showed it. Even with that, the cardiologist blew it off as minor-- and hadn't said anything to me about it-- but when I read the report and questioned him and researched it here with

sarcoidosis and pericardial effusion-- then gave him and my gp the info-- they decided to pay closer attention to these symptoms.

Initially, it would be minor-- but with sarc-- it's a major sign of cardiac involvement. The oxygen thing is also involved, as my heart isn't getting the oxygen it needs, so it's demanding more bloodflow from the lungs, and that is creating pulmonary hypertension. So it's back on the oxygen 24/7. We're hoping that this settles everything back down-- and so it's wait and see.

For me, the Remicade is still helping the body pain, the brain fog, and the lymph pain-- so I am not willing to stop it-- as I have honestly run out of options other than cytoxan-- and I really don't see a need to go there -- and I have chosen not to seek a heart/lung transplant as the sarc is so systemic that more than likely it'd come back in the transplants. So it's time for my son to find a woman and start making me a grandma-- it's one of my big goals. (not his, but mine--LOL!) As for me, I think I've hit a plateau- and I'm good with that. At least I'm not yet wheelchair bound.

I think I answered your questions- I know I got offtrack-- but hey-- the sarcmonster is on my mind, and I don't have a fly swatter available...

Hugs,

Tracie

Re: Making a decision

Tracie,

Thanks for the email below. I wasn't here the first time it went around, but I do have a question for you guys along these lines. A friend of mine just recomended the book "eat right for your type" and it suggests that if you eat the wrong foods for your blood type it causes cells in your body to stick together when they shouldn't (sounds familiar). It also says --like for me, I am B pos. and it says if I eat the wrong foods I am predisposed to autoimmune diseases and rare neurological diseases. I also have thought about using more natural remedies instead of such harsh chemicals. Has anyone had success with anything? I am going to try to follow the eating guidelines in the book, (they are really simple) and see if there's any change. Has anyone heard of this or tried it?

Thanks

CathyTracie <tiodaat (AT) att (DOT) net> wrote:

Here is another blast from the past. The topic was "making a decision."I hear ya loud and clear. I love how you shared that with your diabetes, arthritis, high blood pressure, you have answers and ways you can control these conditions. That's what all of us are asking for, some control in our lives.I also understand it when you say that today you don't have the strength to deal with all this. I am in th esame place. It all just seems so overwhelming. and i were talking earlier today, about how maybe the thought of healing on a physical level may never happen for me-- and how I may have to accept that the healing will be on a spirit(ual) level. I shared wiht him that I agonize over whether to allow my western medicine MD's to treat me with their prescriptions, or to allow my alternative praticioners to treat me with their approaches. I read in a book that said

something to the effect of - People with serious chronic, life threatening illness do agonize over what to do --is it a change of diet, do we need supplements, do we do acupuncture, see the Osteopath or the psychic or the . . .; or do we not treat and see what happens. Then finally, we make our decision as to how to take care of ourself, and as soon as we do-- we tell our loved ones and they say- have you considered this or this or that. Hell yes, we have considered them all. We don't want to make ourselves sicker to get better. But if that choice will ultimately give us some degree of health back, we will do whatever it takes. Whatever it takes.That's the hard part for our loved ones to get-- we have done nothing else but concentrate, educate, seek, pay for, pray for-- answers. Instead of being asked- have you considered XXXX wouldn't it be wonderful if the first reaction would be-- "ok love,

I know that you've spent alot of time pondering what to do, I will support you in this decision." Man how I would love to hear that. Know that it is okay to be weak, tired, scared, sad, angry and worn out. For today, that is okay.Tomorrow we start a new day.Love to all,Tracie

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Thanks for all ;the info. He wants me to start on 10mg/week of Methotrexate. I am taking 600mg/day of Plaquenil. I am kind of scared of losing my hair. Something already made it get really thin and kinky curly. It still is thin now and I haven't started Methot. I guess it is worth it even if I end up bald to slow the progression of this monster. Did it seem to slow the progression for you guys? Just over a year ago I was fine and in one short year I have lost a ton. I am a different person.. I told my husband if I lose this much in the next year, there wont be anything left of me. So I guess I take the medicine and find some cute hats until I get approved for disability and can shop for wigs. Could be a lot worse! tracie feldhaus wrote: MTX has made my hair thinner, but no, I've not had it fall out as in going bald. As for having your MD increase it -- all the major studies have shown that 15mg a week is all you need, there hasn't been additional improvement at higher doses with sarcoidosis. For RA and other auto-immune diseases, increased dosage does seem to help. I know they started me at 7.5 mg a week, and then over the next 2 week, we added ano 2.5 mg up to the 15mg by the 4th week. I've been at that

level for 3 yrs now, and because of the Milk Thistle capsules my liver enzymes are fine. We added Imuran to it initially, but that did shoot up the enzymes, so he switched to Plaq. I've been at 400 mg daily on that for the last several years. When I continued to have progression in my neuropathy and leg weakness, we added Arava, and that didn't work with my gut. So it went the wayside. It was then that I found the clinical trial for Remicade, and was accepted into the trial 6 mo later. It was amazing, after the first infusion (I had to fly to LA every 6wks for a year) I was able to open my fist-- and my thumbs had actually frozen to the palm of my hands. Fortunately,

one of the jobs that I had for a short while was with a physical therapist, and he had me continue to massage that major ligament/muscle that controls the thumbs-- and low and behold, 2 hrs after the infusion, I got on the plane home, and my hand opened up! And the pain in my spine was gone! So I was sold. Initially the first few infusions gave me the sensation of sucking on a corrided lead pipe-- but then it killed all my tastebuds (except the ones that like sweets and Mexican food) and it's still that way. We don't know that it was the drugs, or if it's the nerves that sarc hits-- but the sense of taste and smell is pretty much history. As far as "flares"-- what I've experienced is that once I got the combination of meds that worked-- my MTX, Plaq and Remicade- I was very comfortable for several weeks each month. I still have problems with my lymph

nodes swelling a few days prior to each infusion, and the bone pain comes back for those few days. But yes, I've experienced a day or two where the pain is a nuisance, but not all consumming. I had previously ended up on Duregesic patches, and was allergic to the adhesive, so that went out the window, so I had to settle for Ora-morph. However, I am a pain pill addict- recovered now for 18yrs- but it still scares the shit out of me, and I do not ever want to have to go back to self-medicating (I was getting meds from 3 different docs, who didn't know anyone else was writting scripts- and pay ing for much of them out of pocket, so the ins didn't know what was going on)-- I don't recommend this-- you will get yourself into trouble-- but it was what I had to do. Now with the techniques that I've shared with the group, and the med combo I'm on-- I haven't taken any

Oramorph for 10 months. Anyway, what I've learned is that if I listen to my body, rest when it demands rest- eat right, for the most part, I can still function. I'm able to drive, and only recently have started developing leg weakness in that the neuropathy feels like a turniquet around my left thigh, and from there down it's numb. It starts feeling like I'm walking with a tree trunk swinging from my hip, instead of my leg. The neuro says it's nerve damage from the sarc. I know that if I put my oxygen on-- some of the numbness subsides-- so that tells me that my heart is needing more oxygen when I'm moving around-- and what our body does is take it away from your extremities first, so that your vital organs are supplied. I also found out that my upper lung

lobes are more involved now, and the upper bronchials-- so that my breathing is more compromised. We also found out that I've had a pericardial effusion-- where the fluid around the heart within the pericardial sac that holds the heart and is the electrolyte system to float the heart and regulate heart beats-- became overfilled and has shorted out a spot on the sac-- so it was the same sensation of a heart attack, but since the effusion was on the backside of the heart sac-- it didn't show up on an echocardiogram or as ekg arrthymia. The crisis was over by the time the ekg was done. It was a cardiolyte stress test and scan that showed it. Even with that, the cardiologist blew it off as minor-- and hadn't said anything to me about it-- but when I read the report and questioned him and researched it here with sarcoidosis and pericardial effusion-- then gave him and my gp the info-- they decided to pay closer attention to these symptoms.

Initially, it would be minor-- but with sarc-- it's a major sign of cardiac involvement. The oxygen thing is also involved, as my heart isn't getting the oxygen it needs, so it's demanding more bloodflow from the lungs, and that is creating pulmonary hypertension. So it's back on the oxygen 24/7. We're hoping that this settles everything back down-- and so it's wait and see. For me, the Remicade is still helping the body pain, the brain fog, and the lymph pain-- so I am not willing to stop it-- as I have honestly run out of options other than cytoxan-- and I really don't see a need to go there -- and I have chosen not to seek a heart/lung transplant as the sarc is so systemic that more than likely it'd come back in the transplants. So it's time for my son to find a woman and

start making me a grandma-- it's one of my big goals. (not his, but mine--LOL!) As for me, I think I've hit a plateau- and I'm good with that. At least I'm not yet wheelchair bound. I think I answered your questions- I know I got offtrack-- but hey-- the sarcmonster is on my mind, and I don't have a fly swatter available... Hugs, Tracie Re: Making a decision Tracie, Thanks for the email below. I wasn't here the first time it went around, but I do have a question for you guys along these lines. A friend of mine just recomended the book "eat right

for your type" and it suggests that if you eat the wrong foods for your blood type it causes cells in your body to stick together when they shouldn't (sounds familiar). It also says --like for me, I am B pos. and it says if I eat the wrong foods I am predisposed to autoimmune diseases and rare neurological diseases. I also have thought about using more natural remedies instead of such harsh chemicals. Has anyone had success with anything? I am going to try to follow the eating guidelines in the book, (they are really simple) and see if there's any change. Has anyone heard of this or tried it? Thanks CathyTracie <tiodaat (AT) att (DOT) net> wrote: Here is another blast from the past. The topic was "making a decision."I hear ya loud and clear. I love how you shared that with your diabetes, arthritis, high

blood pressure, you have answers and ways you can control these conditions. That's what all of us are asking for, some control in our lives.I also understand it when you say that today you don't have the strength to deal with all this. I am in th esame place. It all just seems so overwhelming. and i were talking earlier today, about how maybe the thought of healing on a physical level may never happen for me-- and how I may have to accept that the healing will be on a spirit(ual) level. I shared wiht him that I agonize over whether to allow my western medicine MD's to treat me with their prescriptions, or to allow my alternative praticioners to treat me with their approaches. I read in a book that said something to the effect of - People with serious chronic, life threatening illness do agonize over what to do --is it a change of diet, do we need supplements, do we do acupuncture, see the

Osteopath or the psychic or the . . .; or do we not treat and see what happens. Then finally, we make our decision as to how to take care of ourself, and as soon as we do-- we tell our loved ones and they say- have you considered this or this or that. Hell yes, we have considered them all. We don't want to make ourselves sicker to get better. But if that choice will ultimately give us some degree of health back, we will do whatever it takes. Whatever it takes.That's the hard part for our loved ones to get-- we have done nothing else but concentrate, educate, seek, pay for, pray for-- answers. Instead of being asked- have you considered XXXX wouldn't it be wonderful if the first reaction would be-- "ok love, I know that you've spent alot of time pondering what to do, I will support you in this decision." Man how I would love to hear that. Know that it is okay to be weak, tired, scared, sad, angry and worn

out. For today, that is okay.Tomorrow we start a new day.Love to all,Tracie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.