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Anyone take methotrexate with remicade

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Posted 5/23/2023 8:16 PM (GMT 0)
Doctor prescribed subcutaneous methotrexate added to taking Remicade. So now I started injections and folic acid to help with nausea. Hope it helps. At least the injection is weekly not everyday. Just wondering if it helped anyone?

Faith
Posted 5/24/2023 10:40 AM (GMT 0)
Why did they add Mtx to Remi for you.

I had been in remission for 8 years on Entyvio and Imuran. I stared experiencing extra intestinal symptoms and evidence of a soft tissue arthropthy. I've been switched from Imuran to Mtx. However they messed up the transition a bit as I got bad bronchitis (not autoimmune related) and so for 4 weeks I was not on any modulator which threw the soft tissue issue into a worse state. I'm 5 weeks into 20mg Mtx now with folic acid 2 weekly. Some soft tissue issues are good but other are yet to show improvement.

If Mtx dos not work they will offer me dual biologics; prob Humira and Entyvio. However my inclination is to stick with Humira and Mtx in that case.

I've not really noticed any side effects from Mtx. I do have morning headaches but I think this maybe related to a bout of epsceltritis I'm having along with the soft tissue and skin issues. My bowel appears quite good with low crp and fcp readings.
Posted 5/24/2023 10:45 AM (GMT 0)
Actually Faith just read your other posts...have you considered the possibility that the joint issues might not be Remi related and instead form part of an autoimmune response; either independent or dependent to your UC? Remi can cause joint pain especially if you have developed antibodies to the med. However the swelling is more in keeping with an autoiummune response as opposed to a drug induced reaction.
Posted 5/24/2023 11:00 AM (GMT 0)
Always had some type of arthritic pain mostly in lower back and neck. Soon as i went to every 4 weeks with remicade the joint ache has gotten unbearable. I can’t even open my hand all the way. Both hands are really swollen. My wrists and forearm are affected also. Can’t even open a bottle of water.
I’m a massage therapist. Lucky i can massage my own hands now.

Had none of these ailments on any other biologic med. I’ve taken a lot. So the only thing i can attribute all of this is the Remicade higher dose. Tired of complaining, i refuse to live on prednisone. Hopefully this works. Was frightened of the injection part. Seems I didn’t really feel it.

Faith
Posted 5/24/2023 12:05 PM (GMT 0)
You need to explore with your GI if you have antibodies to Remi? You also need to get a Rheumatoid panel run and possibly ANA testing. Maybe you have these done already. It's not certain that all this is drug induced. You may have joint manifestations on top of your bowel issues.
Posted 5/24/2023 12:48 PM (GMT 0)
Having antibody test next week. Did the rheumatologist route 2 weeks ago. Had all tests. All negative. No RA or anything else. Not sure what else is thereto do?
Posted 5/24/2023 1:13 PM (GMT 0)
Hey Faith! I have not been on methotrexate but just wanted to send over encouragement and some healing energy your way. It totally sounds like remicade is the culprit of your joint issues but it is hard to make a change if your UC is ok. I had pretty bad joint pain on remicade, humira (only took the loading dose- it was horrible) and on simponi. Obviously, I stuck it out on simponi since it worked and my UC was happy so I just put up with the joint pain. Now lowering down on pred and rinvoq, most of my body aches are gone which is insane. I feel lighter and more flexible which is just strange. I have dealt with constant joint pain (diagnosed as fibromyalgia and arthritis) for 13 years and am not used to feeling somewhat ok. It is a weird experience for me since my entire adult life has been pain. Maybe it is time to think about a biologic change if your quality of life is really bad. Just depends if you think it is worth risking trying a new medicine since we have so few that work.
Posted 5/24/2023 5:04 PM (GMT 0)
Just because your tests are negative for rheumatoid factor does not rule out RA. You could be seronegative. But saying that on these forums you'd swear RA was the only form of joint disorder out there. There are over 150 types of arthritis of which RA makes up a small small proportion. You need to work with your doctor to discover why you are seeing this swelling. Again it could be drug induced but it may not be and in that case you would do well to get some ultra sounds and the like to see the state of your soft and connective tissue. X rays alone are pretty useless to diagnose joint disease. Don't accept the "wear and tear OA" argument...over the age of 25 it is abnormal to have a normal joint X ray and in many cases the real problem is far deeper than this. Push your doctors.
Posted 5/24/2023 8:43 PM (GMT 0)
What should i push for? I’ve been complaining for the last 3 months. When i was on every 8 weeks things were not like now. Had the antibody test at the 8 week time. Seems the test showed antibodies. Went straight to 4 weeks. Had another blood test after that and it was good. Next week doing it again , my infusion is on the 1st. The rheumatologist has it down that i have RA without factors. What actually is seronegative?
Thought maybe i had lupus. My bother has lupus. I know you can have more than one auto immune dz.
I do see a specialist. Had dysphasia twice.

Joanna, I remember you as bananagirl! How bad was your joint pain on Remicade ? Was hoping he was going to take me off it. Never had anything like this on any other biologic drug. Headaches yes.

Faith
Posted 5/24/2023 9:12 PM (GMT 0)
Seronegative means your antibodies fell below the detection point in your labs, this is why the dr put RA. You can be seronegative & have RA. Anyone seronegative can change to seropositive later on. I found a good site, Rheumatoidarthritis.org, lots of good info there.

I hope this helps some.
Posted 5/24/2023 11:23 PM (GMT 0)
Thanks I’m going to look at that site. Sounds interesting. The rheumatologist said they will see if i need them. So i guess they feel they can’t really help me.
Posted 5/25/2023 10:45 AM (GMT 0)
You need ultra sounds, MRIs. what does ur x rays say. you tell us they diagnosed you with OA? How so? What is the OA pathlogy? Is their joint erosions, edema, effusion, ostephtyes? If so to what extent? If so can a steroid injection be given. On the ultra sound wat is the state of the tendons and ligaments. Is their synvovitis and if so of what ethiology is this. Is there any sign of fluid in your tissue or your MCPs and PCPs. Again if so to what extent and what is the likely source.

You should not be accepting bland and vague statements like "likely wear and tear", "likely drug induced" unless you have medical scans and a professional opinion and an explanation to back this up. You could have multiple pathologies going on and be treated for the wrong one. Likely you are in a bad way now. It will not improve unless you move mountains to get it addressed. I find I have to excaherbate my symptoms to get my consultants to take me seriously...when i did we found on scans that i had been right all along....roll around on your GIs floor in pain or ur rheumy....make references to breathing difficulties and the like so they are professionally obliged to take you serious immediately...
Posted 5/25/2023 12:43 PM (GMT 0)
Faith, it was very noticeable but tolerable compared to my UC issues so that is why I stayed on it but it was only a short time. I think I took maybe Sept-Mar. The migraines were a bigger problem for me. I think TNF inhibitors just give me all the joint pain in general but that is all I ever took for so many years. I only lasted a day on Humira because my hand/elbow froze completely for 3 days. Could not bend the fingers or wrist or elbow so I knew that was a no for me! Did not want to watch the damage it would do to my joints long term.
Posted 5/25/2023 3:19 PM (GMT 0)
Joanna, i guess I’m not tolerating Remicade very well. Next week is the next infusion. This is exactly week 3. You would think it would subside a little. I’ve complained to 3 doctors. Next week is another blood test. I’m not sure what I’m going to do.

Faith

Post Edited (Faithmac) : 5/25/2023 1:26:44 PM (GMT-8)

Posted 5/25/2023 10:44 PM (GMT 0)
Why don't you tell them you want to try another medication? That is, if you want to try another medicine. It kind of sounds like you do.
Posted 5/26/2023 1:14 AM (GMT 0)
I mentioned that to the Gi. For some reason he wants me to try Methotrexate with the Remicade. The UC is under control in remission. Part of me wants it to work. I remember when my UC was at its worse. I keep hoping these ailments get better. I’ve been having video and portal visits. His office is far from my house. I think you lose something when they are not in person. It’s not like I haven’t told him how bad it’s been. He did say what I’m experiencing is side effects that can be from the DZ itself. I guess I’m afraid.
Posted 5/26/2023 10:10 AM (GMT 0)
Have you had any scans or x-rays of your joints?
Posted 5/26/2023 10:44 AM (GMT 0)
Yes had x-rays of hands and SI joint, showed osteoarthritis. Rheumatologist took almost almost every test i could think of. Since my accident I’ve had numerous x-rays and MRI’s . That was last year, mostly arthritis. The rheumatologist was within the last 5 months since I’ve been complaining of all this.
Entyvio was a breeze except for headaches compared to this.
Posted 5/26/2023 9:20 PM (GMT 0)
Hope the methotrexate helps.
Posted 5/26/2023 10:42 PM (GMT 0)
I do too. If not i will ask to change meds. I can’t deal with this for too much longer

Faith
Posted 5/27/2023 2:15 AM (GMT 0)
Sounds like a good plan. Hang in there.

I agree with you on the telehealth visits not being the same as in-person. That's all I've been doing with my GI for the past 2 years because he is also very far away.
Posted 5/27/2023 2:53 AM (GMT 0)
Faith,
I take MX with my Remicade. I also had taken steroids to get my disease under control. I developed severe joint pain before and then after my Remicade infusions. I had all the tests and R/A did not show up... Nor did P/A. My rheumatologist thought it was OA. She also thought the steroids had destroyed my cartilage in my larger joints. We did all the tests and images. Eventually my team of doctors contacted Mayo for more help. Now they really aren't any closer to an answer... 8 years later. I have O/A, R/A and P/A listed in my charts along with severe arthritis caused by an immune disease with no remaining cartilage in my knees, shoulders or thumbs and a side note if Crohn's/UC Arthritis.... So I don't know.

I have had 4 ostomy surgeries, I went off Remicade and MX for about 18 weeks each time. I would think my joints were getting better--but then when I tried to walk, use my thumbs..etc. I still felt pain and you could hear the "crackling" when I moved.

Changing meds is not an option for me at this time. It's a "last resort". I've developed allergies against many medications that I used to be able to take.....(stop breathing... Hospital stay allergic reactions.) If it were just hives I would think about changing my meds. But there's another part that thinks that those 18 weeks didn't make a difference so .... Why chance a flare?? But... For others it may be something they need to do.

My GI starts his patients out on Remicade and MX if at all possible. It drives down antibodies and he has stated he can get approximately 10 years for many of his patients utilizing both medications together. I'm in year 8 or 9.

If you discover anything at all please post it.... Cause we are still searching for answers on my case. This year they recommended bilateral knee replacements and pain pills for the other joints.... Then after I heal we will look at doing the shoulders.... Then removing the bottom thumb joint.... I shudder just thinking of it... And then it'll be my hips.

I hope your disease does not progress like mine has.

Clo
Posted 5/27/2023 11:25 AM (GMT 0)
Clo,
Sounds a lot like what I’m experiencing . This joint pain is terrible. Now it’s in my shoulders and hand also elbow. I have pretty much the same diagnosis. I guess thats why he’s not changing meds so fast. This just came out of the blue. I did have allergic reaction to the Remicade. While having the infusion I developed hives and the night after my throat started tightening up. That made me very nervous. Went to the emergency. Airways were open. They prescribed pred for 5 days. I did tell the GI. Maybe they think i’m hypochondriac . Right after that we did another antibody test. Everything was good. Having another blood test on Wednesday the day before the infusion.
I know some think it’s time to change meds. If i was guaranteed all this would go away , i would have demanded he change to something else. Reading your reply I’m definitely not sure now.

Thanks , Faith
Posted 5/27/2023 3:15 PM (GMT 0)
I know I tend to feel that drs know ALL. But I think there must be some cases that mystify them and they kind of flail around too. They have their textbook cases and patient histories and they know how things theoretically should go. But then along comes an outlier case where things don’t go according to plan 1 all the way down to no plan at all Some probably dig in at that point and insist things will turn around with time. I personally always felt better if they were honest and said they were mystified too but would keep searching for alternatives

I don’t know what I’d do in your case. It’s so hard to even contemplate giving up a hard won remission from this ugly disease! But I think listening to your own gut and pushing back against possible impressions of hypochondriac is the way to go.

Oh, and also I know someone with arthritis (don’t know what type) who takes methotrexate for it. I think it helps her.
Posted 5/27/2023 3:58 PM (GMT 0)
Faith,
I did that whole post and forgot to add...

I did develop antibodies after my surgeries. I would start MX about 2 or 3 weeks before my first post operative Remicade infusion and it would start driving my antibodies down. The higher the antibodies the more joint issues I had.(High pain tolerance ...but would almost crumble when trying to move with high Remicade antibodies --even on pain meds) When we got the antibodies below 3 I was still in pain but I could at least move my joints. So for me.... The methotrexate really does help me. I can not miss my weekly dose. (I suffer from PG so am unable to do the shots) We've gotten the tablets down to 5 (2.5 mg) tablets a week--but they do cause severe headaches, nausea and confusion for 24 to 48 hours after taking.

On the allergic reaction during infusion, I too had that happen. I started coughing. Could not catch my breath. We were waiting for the antibodies to go down with the methotrexate, and for the Remicade trough level to go above 13... Which takes weeks to months... and we started treating with benadryl after my infusion. I'd take Benedryl every 4 to 6 hours for 3 to 7 days after my infusion...as needed. It made me sleepy. But it helped with the itchiness and the coughing and the feeling that there was something stuck in my throat. Very scary time. But once my antibody levels went below 3 and my level was above 11 to 13... I didn't have those symptoms post infusion. We still premedicate prior to my infusions.

My GI has been very proactive on measuring my antibodies and trough levels since the beginning of treatment. We are able to gauge how I am doing and if there are issues by that. If my trough level suddenly dips to 5 we know I am in a flare and we make adjustments. If it just keeps going higher and higher (with me not having as many GI symptoms) I've been in a remission.. Since my trough level reached 19, and then. 27 or 29??? OMG.. I didn't have hardly any joint issues during that time..... Of course my GI lowered the infusion amount and increased the time between because I don't need it that high for GI remission... Sigh.... Now I am at 7.5 every 6 weeks and he's talking about lowering it to 5 every 6. I don't know what that will do to my joints....

So it's something to think about and take note of.

Clo
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