Today amazingly I had a rheumatology appointment, first one after being switched to MTX 8 months ago.
I felt quite dissolutioned afterwards. The registra talked so quickly and had such a strong accent I couldn't grasp much of what he said.
I asked about the side effects I experience after taking MTX each week, generally feeling unwell,very brain foggy and very fatigued. For two days each week I just want to stay in bed.
The registra said MTX didn't cause these side effects, despite my explaining it occurred every week after taking the drugs.
Then he mentioned I might have secondary fibromyalgia which he said caused similar symptoms. He asked about any other pain I was experiencing and I mentioned that in recent months I'd had constant low back pain and despite my CRP now being normal I was still getting pain in my knees and shoulders.
He appeared to suggest secondary fibromyalgia but talked so fast I wasn't sure.
And that was it. I was out the door, to be seen in 12 months. He didn't attempt to explain what secondary fibromyalgia is, what it means for me, if there's anything I can do about it.
Everything I know about fibromyalgia I've learned since getting home and googling it. Hence I know very little, and how it relates to RA.
I wondered if any of you wonderful people have any knowledge about RA and fibromyalgia and if there's anything I could or should do having been told I may have it? Should I see my GP?
I'd be grateful for any knowledge or experience you can share, or guidance.
I know I'm very lucky to have had an appointment at all, and fortunate the MTX seems to working for me. But the appointment has left me feeling a bit low and unsupported, and with more questions than I went in.
Best wishes. Seb.
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Sebastian247
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oh yes fibro and Ra plus all the others. I will inbox you a book I read that really helped me understand them both you can download free from Dr Chaitow site.
Many of us on MTX had 2 down days after taking MRX at one point I was out for the count for 4days and I am sure many on here will be similar.
Thanks Dee. I'll look out for your message about the book you mentioned. That's so helpful thanks.
I don't get why the registrar was so adamant the side effects I experience were not due to MTX. I took my weekly dose this morning and my head feels like it's full of cotton wool now.
Thanks Dee. I've ordered a copy of the book you mentioned. It seems as though feeling unwell and brain foggy most of the time is my new normal, which is a pretty depressing outlook, but better than having active RA.
I listened to the fibromyalgia information seminar on the spondylitis site. It said that fibromyalgia is always preceded by a time of a prolonged illness. This makes your nervous system become over sensitive. That is what I got out of it anyhow. So, that would suggest it is a mind thing which is what my gp says. However, my rheumatologist says that the puffiness around my joints is fibromyalgia so 🤷♀️🤷♀️🤷♀️. Honestly, nothing makes sense to me and I feel unhappy and full of uncertainties when I leave an appointment. I supposedly have fibromyalgia and PsA like inflammatory arthritis. My rheumatologist says we are not going to worry about the fibromyalgia until the inflammatory arthritis is under control. I don't think that it is very good that you feel terrible for two days a week. For sure, I believe, that your symptoms are from the medication. Otherwise why would they be so consistent. I can't believe the doctor you saw doesn't hear of this complaint often. I read on here often that people feel unwell for several days after taking it. You will just have to decide if you want to try something else like leflunimide. Then the trick will be to get an appointment and then to convince the doctor!!!! 😩I don't really think I have been much help!
Thanks for the reply. I think there's no chance of me getting another appointment in the next 12 months, or a change in medication. It's proved nearly impossible to get an appointment when I'm supposed to have one!
It seems I'm stuck with the side effects of MTX.I guess lots of people on MTX experience similar problems. Maybe I should stop complaining!
speedy but fibro is not a mind thing doctors used to think that way and many still Do but read the book by Dr Leon Chaitow who was a leading consultant in the UK who showed wht the causes were etc.
the it’s in your mind idea has meant fibro has taken years and years to be recognised. My private consultation was the one who recognised my symptoms by hitting the fibro trigger points as I was at my wits end on what the other pain was as I knew not the same as RA pain.
fibro definitely not a mind thing . I thought I was going mad as told no not RA but given no explanation took months before diagnosis. Pregablin has made such a difference so definitely not a mind thing.
I take MTX and MTX hangover it’s a recognised side effect according to my rheumatologist . I have a day or two of it . I can’t go above 15mg or I’m bad for 5 days often sleeping 20 hrs plus . If your not happy with your rheumatologist it might be best to get a second opinion.
I was diagnosed with RA first but was changed to Psoriatic arthritis in July as I have lower back and buttock pain with wide spread tendon pain sometimes diagnosis can change it can take time, it helps if you are listen to and tested . If your not happy I would try to see someone else.
Thanks for your reply. You are so right about the importance of being listened to. I didn't feel listened to at all, which wasn't helped by the language barrier.I don't know how to go about trying to see a different rheumatologist.
I think I might phone the helpline and see if I can speak to a rheumy nurse about things.
I am puzzled. The symptoms you are experiencing are classic side effects of MTX. They are listed, amongst many others, on the patient information leaflet enclosed in every box of the drug. Has this registrar ever encountered RD before because he is wrong? Fibromyalgia is often found hand in hand with inflammatory conditions but can also be a stand alone condition and very unpleasant it is too.
Thanks for backing me up regarding the side effects. I was as puzzled too, because I didn't think my side effects were unusual.The registrar's strong accent and very fast talking made it impossible for me understand what was being said and have a proper discussion with him. He may well have been struggling to understand me as well.
The fact that I have a hearing impairment and use a hearing aid in one ear didn't help either of us.
It's also really unhelpful the registrar suggested I may have fibromyalgia and offer no advice about it whatsoever.
If you feel the need for more support the NRAS helpline is there during office hours and very lovely they are too. The number I have is 08002987650. I hope this helps
I had symptoms similar to yours and after 18 months on mxt I had an allergic reaction. Phoned my GP and was told to take a antihistamine pill. Then Rhuemy phoned to say do not inject again. This isn't meant to scare you but to be aware
Thanks for the heads up. The thought of feeling so rubbish and mentally impaired at least two days a week for the foreseeable future is depressing. I work full time and it's affecting my work. I was just hoping the registrar might have some suggestions to reduce the impact of the side effects. I wasn't expecting to be told they aren't side effects from the MTX.
Hi Seb, I have RA and Fibromyalgia.. yay 🎉🥴. My fatigue used to be quite ridiculous, and I too was poorly (nausea) for a few years when I first began Mtx. I also hurt ALL the time 😭.
1. I now take an antiemetic one hour before my Mtx which does help. I put it in the centre back of my tongue as it tastes disgusting.
2. My folic acid has gone up to 6 days a week (not Mtx day).
3. I take Amitryptiline 20mg* at 7pm every night. This took a while to work but has (looking back) made a huge difference to my quality of life. I sleep soundly now, which increases my energy levels (as I am well rested). It also helps with pain, which has virtually disappeared 😳. *My Rheumatologist suggested this for my Fibro symptoms*
4. I stopped trying to do too much/ stopped regarding myself as a failure.
5. I took early retirement just before Covid. Was really upset for about a year; now feel happy and relieved.
6. Got a year of one to one counselling to sort through it all (was immobile at 41 for a couple of years from RA ☹️).
7. Finally have the hang of this ‘pace and rest’ business [12 years later😂]..
It’s a journey…
• in reply to
Fibro-fog, which I forgot to mention 😂😂 still affects, and is one of the reasons I had to give up work. Memory like a colender.
• in reply to
There is a Fibro site on here, not for me, but maybe you will find it useful..
Thanks for the message. That is quite a journey, and some life changing decisions to boot. It must have been very tough at times.I seem to have very similar symptoms to the ones you've experienced, very poor sleep, declining memory and cognitive function, brain fog and so on.
I tried amitriptyline, but had a horrible experience with it, I've had similar with some anti depressants. So I can't take it.
My joint pain is much better now on 20mg MTX. I don't suffer nausea from it, just headaches, serious fatigue and worse brain fog than usual, for two days after.
I'm only on folic acid once a week. I had hoped the rheumatologist might suggest increasing it to help with my symptoms but he implied folic only helped with nausea.
The remaining pain (lower back, knees and shoulders) is persistent but dull. It feels different to RA pain. I didn't think it was bad enough to be fibromyalgia.
But I have other symptoms that I've read occur with fibro, poor sleep, brain fog, needing to wee a lot in the night (although I've an enlarged prostate and abnormal PSA test and I'm being investigated for prostate cancer at the moment 😞) etc. So maybe I do have fibromyalgia....
It would have been helpful if the Rheumatologist offered some advice when he suggested I might have fibro.
so you are on enough folic acid. I was reading your profile and that they think this was triggered by the covid vaccine. That is really disappointing! I am finding that all the doctors tell me something different and it is really hard. I have no idea if my muscles and tendons hurt because of the inflammatory arthritis or if it is the fibromyalgia. I am in Canada and the appointments are hard to get here too. I didn't do well on the methotrexate so I changed to the leflunimide. Maybe you might want to consider that if things don't improve. I remember my doctor saying that the methotrexate side effects will lesson with time so maybe things will sort themselves out and your headaches etc will decrease. For me I was just too sick. Stomach cramps so bad that I couldn't walk. The only thing that I was told that helps the fibromyalgia is gentle exercise. Hope all is OK with the prostate. Are you in the UK?
Yes I'm in the UK, Cornwall, near Lands End, as far south west as you can get in the UK. Where about in Canada are you?
It's true that my RA symptoms started three days after the first covid vaccine. As you say the doctors aren't keen to say anything about vaccine side effects, but I've heard about lots of people with autoimmune problems after the Covid vaccine.
I would liked to have discussed alternative drugs with the rheumatologist but he clearly didn't see any need. I can understand it, the MTX is working and the side effects are tolerable, just! I just don't like the idea feeling rubbish two days a week is my new normal for life.
Like you I'm not sure if I've fibromyalgia as well. Although my CRP levels are now normal I'm still in some pain. And I have other symptoms that suggest fibromyalgia so I've discovered. As it's only just been suggested I have it, I'll need to do some research and speak to my GP.
I hope you're right and the MTX side effects pass in time. Does leflunimide cause side effects? I hope it's working for you. Your experience on MTX sounds really tough.
I had an prostate MRI yesterday, I hope the results come back quickly. Fingers crossed.
I am in Calgary, Alberta and we are having a snowstorm right now! Calgary is on the edge of the prairies and the Rocky Mountains are 45 minutes away. We get chinook winds because of this and the temperature can warm up 25 degrees Celsius in an hour! (eg. -30 up to -5) I bet Cornwell is a beautiful place to live. I love being close to the water and love the sound of waves. Not much water close to here though! Leflunimide can be really awful for some people but it was great for me. I didn't have any side effects that I noticed. Then I got my covid vaccination and my leflunimide just stopped working as well as it had been!!!! So now I am going to go on biologics. I actually wonder if I should but my doctor says that my disease is severe! Sure doesn't seem severe to me! She says I am probably just accustomed to feeling badly. Again,🤷♀️🤷♀️🤷♀️. That emoji fits my life perfectly. 😂. 🤞for good results for you! Thank you for writing back! Oh, if you have fibromyalgia they say to pace yourself so that you don't get to the point of exhaustion. I think that is because you want to retrain your brain not to feel like your body is exhausted and in pain. Honestly, some people say fibromyalgia is just what they call anything that they don't understand. If you stay on the methotrexate until your next appointment and you still feel terrible I would ask to change. Really there is no reason for you to feel terrible two days of the week. That is 30% of your life! Especially because there are so many other options. In Canada you have to try both leflunimide and methotrexate before going on a biologic. I all comes down to the fact that methotrexate and leflunimide are so inexpensive compared to the newer treatments IMHO.
Hi there. I've been meaning to reply to your message for days.I'm kind of envious you're having snow, although I expect you could do without it and it's hugely disruptive to you, and cold!
We rarely have snow in Cornwall so it's a huge novelty. One inch of snow here causes massive disruption and stops everything. You'd laugh at how useless we are at coping with the tiniest bit of snow.
What are the Chinook winds? It sounds fascinating. I've never had the pleasure of visiting Canada, but it's long been on my bucket list, and particularly the Rockies. It sounds beautiful.
I've still yet to receive a letter after my appointment with rheumatology. I wonder if they'll actually write. I think I'll phone the rheumatology nurses and ask if anything can be done about the MTX side effects.
I had the prostate MRI results back, all clear thankfully. I'm very relieved. It was quite stressful.
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