Methotrexate

Hello Deborah

Thanks, for responding to message. I'm afraid to try methotrexate. Not really knowing how it will affect my body. I guess my body is immune to the prednisone and now it's not working. I need to be on a very high dosage in order for the medicine to work.

I was afraid to start it to but I'm happy to share I've been in it for over 10 years, in total, and have had no trouble. Your doctor will monitor your liver and kidneys monthly (or close to) and they will be able to catch any adverse reaction quickly, from what I've always been told. That helped me when I first started. My doctor told me, which made me mad at the time lol, it was take the medication or lose a lung. I really had no choice but to try as the possible rewards out weighed the possible risks.

I always hate starting any new medicine, you read so many risks and possible side effects. Each person reacts differently, too. Like you, prednisone stopped doing the trick for me ...

For sarc, there aren't very many other options unfortunately, as far as next step from prednisone. Definitely talk with your doctor though for alternatives. After methotrexate, when it wasn't working (was on it and pred and plaquenil), they started me on humira.

I hope you can find some answers and peace in your decison for your next step in your treatment. It's sure not easy.

Deb

I was on humira for a year. My immune system gotten low I caught pneumonia and couldn't shake it. I was sick a whole month. Do methotrexate make u tried or sick? Are u taking methotrexate now and prednisone? It's starting to affect my teeth now. I pray everyday that God will touch my body.

Methotrexate lowers your immune system too, like humira. Depending on your dosage, it may not be as bad as your humira was. I have to take a different kind of steroid as I have adrenal insufficiency caused by hypothalamic sarcoidosis so I'm not in prednisone but I'm hydrocortosine. For my sarcoidosis, I take 10mg methotrexate weekly, folic acid daily, 400mg plaquin daily and then have remicade infusions every 4 weeks. For me personally, I preferred taking methotrexate over prednisone simply due to the side effects I had with prednisone. I gained SO much weight on predisone. I haven't really had any problems with getting sick while on just methotrexate but since I've been on remicade and methotrexate, my immune system is pretty weak and I do get sick easily.

Sounds like humira didn't play very nicely with you. I was lucky in that I didn't really have much problems but it just didn't help me.

I belong to a large support group and the worse I've heard from those who take methotrexate have been ... it makes some tired for a day or so, a few get an upset stomach the day they take it and then I've seen a few have changes in their hair. Those effected are very few compared to those who have little to no problems.

If your on Facebook ... look up a support group called Sarcoidosis Women. There are other groups for men and women as well, that are wonderful, and you can find them by searching on Sarcoidosis.

Hello debie1966,

The doctor stated this would be the next step to take. I live in Ohio where we have different seasons all year round. I believe the weather plays a big part of my sickness. I served 21 years in the military. My last duty station was in Texas. And was never sick like I am now. Today, both of my eyes are bother me today. I'm going to try methotrexate and hope everything works out for me. This is my last resort. I like to drinking chardonnay wine. What affect will it have on me if I drink chardonnay while taking methotrexate once a week?

im on methotrexate and humira.  I cannot tolerate the prednisone effects so I cant take that.  I took Acthar Gel for awhile the side effects are similar but not nearly as intense.  the methotrexate wipes me out the next day and I am shedding my hair more but the side effects are very tolerable.  I dont know much about the humira yet as yesterday was my first dose I feel sick and weak and tired but we'll see how the day goes on. dont be afraid of the methotrexate it really isn't as bad as you read on line.  I was scared to death of it ... but I have had very few side effects mainly the wiped out feeling and that is already getting better and I have only taken 5 doses...2 doses that were my new dose. which the doctor doubled me.  I think you will find you prefer the methotrexate.  Be careful around sick people as your immune system is lower.  Good luck!!

Oh I didn't realize that.  Im taking it for my sarc...but I do not have asthma or even sarc in lungs.  Thats interesting info thank you for sharing. 

Surely sharing helps us all

Thanks, for responding to the message . What kind of medicine is Mycophenolate and what are the side effects? What is the PCP bug?

Hi Mycophenolate is a similar to Methotrexate used mainly in Transplant Patients from what I understand. If you research it you will find it. Though they do list many side effects unlike Methotrexate I don't seem to have the issue. I'm on the maximum dose and have been for 6 months no issue.

PCP is a infection similar to Phneaumonia but can be very serious, again if you Google PCP you will find it, 

 

Good morning, thanks for responding to the message. I had a flair up 4 weeks ago. I only been off the prednisone a w

a week . And now I started flairing up ago. I think my body is a immune to the prednisone.

I am unable to take prednisone due to the side effects I get.  They are pretty intolerable for me.  They tried H.P. Acthar gel, similar to Pred but less side effects and when you get them they are less intense too....only problem was it didn't work fast enough on my main problem so they switched me and its too soon for us to tell if its working. my eye is still hemorhaging (Its already blind so I dont notice the "leaking" they consider me a "complicated case' lol....I was difficult to diagnosis, like we all are, and I failed to respond to the first two treatments so far, extremely healthy except this.  I have been on a double dose of the methorexate for 3 shots (today is number 4)...but on it for a total of I think 7.  Humira I started 2 weeks ago with 4 shots (160mg) and today is 2 shots and in 2 weeks a I start a weekly maintenence dose.  Its really high dose.   to get to my point Methotrexate has worked wonders for many!.  I had very few and very short lived side effects.   I notice if I take it too early, (I used to have to take my Acthar early because its like a steroid) ...about 12 hours later my symptoms would start....now if I wait till about late morning I sleep through a good portion of them...you will need to find your good time.  I do the shot because even that makes ,me nauseous..I understand the pill form is hard on your tummy, any how...tomorrow I feel extremely fatigued, monday I feel a little fatigued and nauseous...then Im good for rest of week.  I saw the dr. yesterday and he said they will continue to get better (the side effects) so they aren't that bad.  My Humira dose is so high I dont want to comment on its a effects...BUT they are also tolerable.....dont beleive everything you read on the internet about that one IF anyone has to ever take that.  Its not all that painful if you warm it up etc.  The internet can be scary!!  I take folic acid with the methotrexate it helps with some of the side effects, bactrim 3 times a week I think that helps my immune a little but not sure, and I added a probiotic too help my immune.  Side effects are tolerable...Way better then prednisone (at least for me)  

I googled PCP (I was curious too) and it seems like a pneumonia we normally easily fight...but because we are compromised immune wise we cant do it.

This is a good site if you are new...hate to say bad thing about another site but Inspire is scary...there aren't any up beat stories there.  On this site people are encouraging, helpful, upbeat.  I LOVE to read how some is succeeding and doing well....or like in your case trying something new and people encourage and inform you.

I hope you find something that works with little side effects, we are all so different and so little is known about sarc.....please let us know what you decide and how you do .

Take care Jean926!

Magghe 

what were your symptoms with the PCP?  I have a cough since I started the Metho (no immediate.), and Right mild tummy/side pain but NO fever, infact yesterday at drs I was just below normal at like 97.1 I mentioned the cough to doc...but forgot about the pain it has never been bad.  2 years ago I had what they thought was Pneumonia 5 times 2 times I was hospitalized....my only symptoms were Pluerisy pain no fever no cough....this does not feel like that.....not asking for medical advice   and I am trying to stay away from "sickies" and washing my hands etc....but..that PCP almost seems sneaky lol...so just curious what your symptoms were.

I would hate to get any infection right now...we hven't been able to give these two enough time to see if they are working yet

Thanks!

Hi Magghe, the thing I learned was you cannot have an antibiotic with Methotrexate as they are not compatabile. PCP is a form of Pneaumonia. Bactrum is the antibiotic I take (1/2 tablet daily). My symptoms were cough and shortness of breath. I would run out of air even when talking. The Doctor moved me off Methotrexate and gave me large doses of Antibiotics to clear the infection. Today I am feeling 200% on what I was 12 months ago. The combination of Infliximab infusions and my other medication really knocked the Sarcoidosis out. My inflamation is gone and the disease is not active. The plan for me now is to get off all medication over the next 6 months. Back too 15mg of Prednisone which I want gone then I can get the others reduced, I was as high as 70mg and just looking forward to my body getting clear of it. Hope this all helps you in your fight, if I can say anything it is 12mths ago everything looked not so good today I am a different person with hope fight and drive to beat this disease completely. Take care and know your not alone happy to share my experience anytime.

David

Thank you David.  I love this site because everyone is encouraging and upbeat...some of the sites no one is happy nor do they have good stories about their fights.

My dr. has me on Bactrim DS monday wednesday and Friday only.  along with the Methotrexate and double dose of humira (well double what they recommend for uveitis).  they did my bld work last friday and it wasn't great.  re did it today and we saw some improvement but kidneys seem to be slow in recovering...I haven't even been on either long enough to see if they are working.  I think I was pretty dehydrated on both draws...but what concerned me on todays is now, for the first time, by WBC was up.  Normally it never is...but we'll watch it.  My PCP gave me a script for ATB's incase I worsen over the weekend....I think Ill run to the express care or message my sarc dr. if I feel worse.  he was trying to prevent if from getting too bad over a weekend...but he is also learning about sarc from me because I keep him in the loop and im considered so "complicated" LOL...Im difficult but not complicated LOL....anyhow I am very different from his other sarkies LOL  one because Im his first Neuro sarc and two because im "complicated" (not responding yet to meds).  Hes not my main sarc dr....that dr. is the specialist in sarc...but they all need education I think and its so cool that my PCP admits hes learning and doesn't know everything.

Thanks again for you and everyone on this site ... I love to hear your success stories or remission stories...there is so much hope!...I know I am blessed and it could be worse...but hearing you guys only strengthens that feeling.  I hope this site never turns bad

Magghe