Reaction to Methotrexate?

[AnimalLover115]

Hello everyone, I was wondering if anyone else has experienced this reaction to taking Methotrexate...

I started Methotrexate 3 weeks ago and last week I began taking the highest dose (8 pills). A few days ago I noticed that these raised bumps were appearing on both of my thighs, and now they have spread over my arms as well. They are not itchy or painful but I am concerned that they are spreading and getting worse. Perhaps a reaction to Methotrexate? I also developed some sort of eye infection, itchy and painful, but I have prescription eye drops now to start to hopefully help with that.

For reference I am visually impaired, so my mom who is a nurse looked at these bumps and thinks they look like hives. I see my rheumatologist tomorrow so of course I will discuss this with him and I am also going to request to see my dermatologist again.

I'm not sure if I will need to stop taking Methotrexate or if my body will get used to it and this will go away on its own. I know I might have to stop taking Methotrexate but I really wanted to give Methotrexate a chance to see if it will help my joint pain. I was on HCQ for two months but had to stop it as my neuro-ophthalmologist requested that I do so immediately. I am also wanted to change rheumatologists because my current one has been quite dismissive and during my last appointment he didn't remember what we previously talked about or what medication he prescribed me. He also seemed personally offended that I stopped taking HCQ even though I explained why. He said the only other medication I can take is Methotrexate and that it has horrible and long lasting side effects (I was not too impressed with this delivery).

I'm really losing hope and I am desperate for relief from my joint pain.

Anyways, thanks for taking the time to read this post!

I would greatly appreciate any personal insight you may have ❤️

[Turquoise-1]

Hi AnimalLover115, it’s rotten when your body reacts adversely to a medication that is supposed to be helping you.

My body can’t tolerate Depo-medrone steroid injections, Hydroxychloroquine nor Prednisolone, I had immediate severe reactions to each of them & will not ever have any of them again regardless of what any Dr tells me. I only managed 7 weeks on Hydroxychloroquine as the side effects were so bad. I ‘prefer’ to suffer the symptoms of my illness/ailments than the awful side effects certain medications.

It sounds like your body dislikes Methotrexate and thankfully your Mum has the experience to recognise this; hopefully your Rheumatologist will see it also & advise you to stop taking them.

I personally have no experience of taking Methotrexate but my husband has, it was the 1st drug he was given 9 years ago when newly diagnosed with Rheumatoid Arthritis- he hated it & how it made him feel, plus it caused him to go off certain foods, eg baked beans, he simply could no longer eat them. His skin took on a yellow tinge although he was not jaundiced & he suffered sore, red, dry eyes.

Fortunately, his Rheumatology Team quickly recognised that there was no benefit whatsoever to him taking Methotrexate as it wasn’t helping his symptoms at all - he was so relieved to stop taking it. Several years & many more drugs down the line he has found some relief after having Rituximab IV infusions & a combination of DMARDS & pain relief medications.

As for myslef, I currently take no specific medication at all for my Lupus, just Tramadol, Naproxen, Paracetamol & Diazepam. Having had Diclofenac Sodium previously, I think this is way better for pain relief than Naproxen but GP refuses to prescribe it despite being instructed to do so by Consultant Rheumatologist!

I also use Fenbid Forte anti inflammatory gel which I rub into my many sore, painful joints; This is a actually my husbands which he has on prescription, but I highly recommend it if you could get some. A tube lasts quite a while & it really does work ….

I have a TENS machine (dual lead), which whilst you mustn’t put it directly on to joints, it does give benefit to the muscles & tendons as well as distracting my mind from the pain with its pulsating/buzzing. Having lots of orthopaedic problems as well as Lupus is a daily challenge & some days I am totally incapacitated.

Today I have managed housework, dog walk, yoga/physio and swimming plus hydrotherapy pool…..My body hurts if I do but hurts equally if I don’t do, so I’ve come to the conclusion I might as well do!

Good luck for tomorrow & finding something which helps you without side effects 🙂

[ijeasike]

HiI so sorry your having these reactions. I was on methotrexate 9years ago but it got stopped because I developed severe acidic reflux. It was not helping my symptoms too. I was then placed on cyclophosphomide for 6months. We all react differently to various treatments. Speak to your consultant and see if they could use another treatment in managing your condition. Take care

Kind regards

Ije

[Cas70]

Dear AnimalLover - have had reaction to certain drugs too. First thing I would suggest is that you take a different approach. Listen to your body - it is telling you this drug is not for you. Secondly I would research to find a new Rheumatologist who specialises in autoimmune illness. Many don’t. I have finally found one after being fobbed off as you were so many times. Indifferent would be a good way to describe most of them. Try some natural remedies like Turmeric for your pain. It really works. Read up on it. Buy it loose and take a DAILY tiny amount in your cereal or mixed with honey and lemon. I even boil potatoes in turmeric with a little black pepper as this help potency - delicious! I now rub it into my gums as tend to get mouth ulcers. It clears them up overnight. I use Olbas Oil on my joints - another great painkiller - no drugs. Eventually I went to a proper registered, accredited Herbal Medicine Practitioner- I am much improved. I see that you are only 20 - I have 50 years on you and I would suggest that you try a natural path as much as you can, I still take Hydroxychloroquine and Celluvisc eye drops, but got concerned by all side effects I was having from other drugs. Very best of luck

[Mimi1900]

I have been taking HCQ for 13 years. I stopped twice for 2 different reasons. The first time I stopped was because of m’y Opthamologists concern for the fact that HCQ can cause blindness. The second was due to acid reflux. When I resumed I switched to plaquenil, the name brand in the advice of some people on a British forum that it might be easier to tolerate. I get special checks using twice a year getting some kind of special comouter scans of the part of my eyes that can be impacted by HCQ. This test was not available through about 2016. I am in Boston. I have resumed HCQ because it is the single best medicine that someone with Lupus can take to promote longevity. I think Europe & GBR have been slow to push this but all the latest recommendations out of your standards organizations now recognize HCQ as a basic standard of care. I believe that it is viewed similarly for RA. It also helps with joint pain, however not enough for me. I currently take 22.5 mg of methotrexate and I have various bloodwork every 3 months to monitor its safety. I also take folic acid to help alleviate the various side effects that methotrexate has caused me (nausea, vomiting, hair loss). Recently I began taking 25 mg of leucovoryn rather than daily 1mg pills of folic acid which my rheumatologist believes will help with the hair loss (I do think it is helping).

Why do I tolerate these various side effects? Because these are the main drugs that will help me to lead a better quality of life (methotrexate has helped tremendously for the high level of joint pain I had & the resultant disability I experienced from it). Everything my Harvard based rheumatologist has told me is that HCQ is vital for me and methotrexate due to its king use is the safest and best drug to handle the joint pain and disability that I have experienced.

Do I wish that I didn’t have to take these drugs? do I wish there were médecines/treatments that can cure my chronic illness. yes. These are the cards that we are dealt. Listen to your rheumatologist regarding the HCQ, it was prescribed for a reason. My eye specialist has a better understanding of the necessity for HCQ so I get tests to monitor for the eye problems that may occur.

If your joint pain is handled by an NSAID then of course I wouldn’t take methotrexate. I would still urge you to reconsider HCQ. RA and Lupus patients tend to develop and die from cardiovascular problems at a much higher rate then non autoimmune people. HCQ apparently is the lifesaver/extender for this.

[Dustb]

Hello AnimalLover115, I don't know when you say bumps if it's the same thing I have experienced since taking Methotrexate. I have been on the drug for many years and I have bumps that appear under my armpit, under my breast and on my stomach. I only know there are there when they start to itch. They scab over and then disappear. I have seen a skin specialist who told me it was like a asthmatic rash, and prescribed Betnavate Cream, which works when I apply it twice daily. They then disappear. I do have a few scars from them. I have been using the cream for many years. That's all I can say really. I hope it helps. Try not to stress too much, as you know it's not good for people with Lupus. Take care.