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Methotrexate is working

jobob
0 Recommendations

Hi there, I haven't posted in a while because I've been very busy. Busy because I feel pretty good for a change. I have been taking Methotrexate for a couple months and things are definitely improving.
I have much more stamina and a lot less pain.
I just got back from 2 weeks in MD, taking care of my sister and her family after her bi-lateral knee replacement.....ME, taking care of someone other than myself for a change. I loved every minute of it.
I haven't felt very valuable for a very long time and I'm starting to feel like I am.
I hope that some of you can benefit from this post...perhaps you haven't tried Methotrexate and now you will. I had very mild side effects the first few weeks and now, none other than the good stuff.
Good luck everyone...I'll keep you posted while I continue to follow your posts and pray for all of us.
jobob

Explore topics in this discussion:

Pain Prednisone Methotrexate Diabetes

14 replies

kmb

Jobob,
I am glad to hear you are having success w/ your treatment. It is always good to hear about positives as so many of our posts reveal our frustrations and suffering. You are so right about the benefits of just getting outside of yourself and helping others is a great way to do this.

Just curious, did you wind up going to Hopkins? I thought you mentioned you might be going there a while back. If so, when you get a chance could you share w/ us who you saw, what areas were affected, and other details? I have been seen at their sarcoid clinic on and off for about 10 yrs w/ mixed results. I did have a wonderfully gifted urologist that I saw while I was there though.
Good to see you are doing better.
Kristopher

sheree52

jobob I am so happy to hear this, I also have been on methotrexate for 1 month and last week I felt so GREAT. 5 days with no pain in my legs and hands no swelling. I take it on Friday's so I still am a little sick to my stomach over the weekend, but now today I woke up and my feet and hands hurt and my fingers are swollen so I'm hoping by tomorrow the drug will have kicked in again and that is gone. Does that happen to you ??

jobob

Thanks for you reply Kristopher.
I applied to be seen at Hopkins quite a while ago and never received a response. I found a Sarc. Specialist here in Boston who is doing a good job. He tends to contridict himself from one appointment to the next but did prescribe the MTX which as I said is working so I'm not going to complain...yet..lol.
I have sarc. of the lungs which the last CT showed is shrinking and I cough very little now. I still get winded when I do any incline or really push myself but can deal w/that because over all my stamina has improved. I also have sinus, lymph and skin sarc which have improved also but still slightly present. I will be having more tests..pulm, ct and blood work next week to see how much improvement there is and he will decide whether or not to increase MTX or stay at this low dose for a while...7mg once ea. wk.
I am so excited and grateful for the improvement and hope to at least stay this healthy.
I hope that you are doing well and always pray for my Sarcoid brothers and sisters.
Keep in touch.
jobob

jobob

Sheree52, what dose are you on? It's so funny, I started out by counting the days of less to no pain as well. I would wake up and post on FB...day 1,2 or whatever it was of "no pain" because I just couldn't get over it. I'm so happy for you and pray that the improvement continues.
jobob

DoreenC

I am so happy for you. I'm hoping to get on the same regime in the near future. The high doses of pred are causing a lot of joint/bone pain.
Your story is inspiring.

Doreen

jobob

Doreen, I was originally on Pred. but have been a type 1 diabetic most of my life and it was causing my blood sugars to sky rocket as well as causing some psychological issues. It's a wonder drug and can do great things and sometimes cause terrible problems.
Good luck w/MTX...I hope it works as well for you as it has so far for me.
jobob

DoreenC

Jobob:

I can understand the diabetes and the pred not cooperating with each other.
Again thanks for sharing your story.

Doreen

jobob

Prednisone can raise blood glucose, even in non diabetics. It caused dangerously, unmanageable high blood sugars for me.
jobob

harmles2

I'll chime in I've been on MTX for about 8 months .... I'm down to 7.5 mg p/week. While I'd admit it "may" have greatly improved my sarc symptoms, I may be feeling better for other reasons.
During the last 6 months I've had at least 6-7 infections that required antibiotics. MTX shut down my immune system far more than pred ever did, but the more frequent infections have not been good either. I actually feel the improvemetns are more related to all the antibiotics I've had to take.
At this point, I've instructed my doc that I want off MTX .... being sick so much has not been worth it. MTX may work differenty on each of us, I would agree that it did reduce symptoms, but at a cost that I now consiider unaceptable.

harmles2

jobob

I am so sorry to hear this harmles2. I have not (yet?) experienced a single infection. I am on a low dose and haven't been taking it long. You are right that we all have different experiences. Thank you for sharing yours.
jobob

middie1

Jobob,
So wonderful to hear Methotrexate is working well for you!! I am new to the site, have been on Methotrexate 15 mg every week for 16 weeks. Has made all the difference in my Life-style. Getting back to the old me. Thank God. Prednisone had many side effects that I could not tolerate and am weaning off it slowly. The issues to watch for while on Methotrexate are elevated liver enzymes, they should be drawn every 4 weeks, and a compromised immune system, after all that is how it works. I have some other side effects too, like mouth sores and toungue pain, as well as feeling sluggish and nauseated for 1.5 days after taking it, but it is well worth it to feel well the rest of the week, and to have energy and not cough. Hope it continues to work well for you at this low dose. I am so glad I found this site so i can talk with others who are experiencing this condition. Have a great week. Middie1

jobob

So nice to meet you middle1, Welcome. I love this site too, it has helped me through some very rough times...we're all in the same boat.
Dosen't it feel great not to cough every two seconds? I'm so excited about feeling well. I almost didn't recognize it...lol.
Keep in touch.
jobob

melissa_e

The timing of your post is perfect, thank you! My doctor at National Jewish wants me to start MTX. I had a long talk with my local PCP today about it and I am going to start in a few weeks. Thanks for the posting the positives of the treatment.

jobob

Good luck w/MTX, hope you have the same results or better.
Keep in touch.
jobob

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Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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