I’ve not posted for a while as I have been in and out of hospital with my other ailment - fistulising Crohns - all brought about by the Covid vaccination.
I have been put on Infliximab infusions for the Crohns, and then, after having agreed to this treatment, threw into the pot that they also want me to take methotrexate as well, to prevent me making antibodies against the Infliximab - which is apparently a possibility.
I do not really want to do this, but maybe have little choice. I have already lost SO much hair because of the Prednisolone- and was looking forward to the day when my hair may start to thicken up. Not my only worry though, as I had already read up on both Infliximab and Methotrexate and possible nasty side effects.
I have been instructed to come off Prednisolone as soon as possible as they don’t really want me to have three immune suppressant drugs.
I am currently on 3mg of Pred - and planned to start reducing slowly as before. My rheumatologist told me to stay at 3mg whilst I was going through the Crohns situation - so far they have no knowledge of this latest instruction from the Gastro consultant.
So, what am I to do? Any ideas?
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Songbird69
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My heart goes out to you Songbird69, you’ve had such a horrible time. I have nothing to base advice on because I am not familiar with Infliximab and rejected Methotrexate because of the side effects. Personally, I wouldn’t feel too worried about being on 3 mgs of Pred, the side effects will be negligible and yet these tiny doses play their part in keeping us well. My hair seems to be recovering even though I had to start again with Pred due to GCA coming on last year. I use Kevin Murphy products as recommended by my hairdresser and they have helped - all very natural. I would want more information about the case for Methotrexate preventing antibodies forming against infliximab in order to make an informed decision . Good luck!
Hi SJ, Thank you for taking the time to reply. I believe that they think having me on all three drugs will be a step too far in flattening my immune system. Hence instructions to get off the steroids ASAP. I don’t want to take methotrexate at all ☹️
I too had to start on the higher doses of Pred due to GCA diagnosis - seems like being on a hamster wheel! (Not even sure I had/GCA and neither does the rheumatologist!
I’ll look at the Kevin Murphy products - thanks for the recommendation.
Demand advice from an endocrinologist about the final steps of getting off pred. It isn;t necesarrily the PMR that will be the limiting factor but the adrenal function.
So sorry to hear what you have been and are currently going through, you must feel so vunerable right now.
I was on Prednisolone for only 6 weeks but you do not say how long you have been taking them ?.
All I know is before taking Methotrexate ( been on them now for approximately 20 weeks ) I was in real pain in my wrists, hands & knees.
The difference the Methotrexate has made to the quality of my life is immesurable although it takes 12 weeks to kick in !
Maybe you can suggest to your clinician to see if you can come off the Prednisolone ( perhaps after the first 12 weeks of Methotrexate and just see how you feel for a few weeks at least you will stop the Prednisolone which is one of your big worries it would seem.
Hi. Thank you for your message. I have been on Prednisolone for about 4 years, for PMR and GCA. Unfortunately it is not a case of coming off it, but a slow reduction to keep it under control.
May I ask what side effects you have experienced with Methotrexate?
But remember that you have a diagnosis of RA - which isn't the same as PMR. I had almost as much pain on MTX as I had had with PMR pre pred. For me MTX just made pred side effects appear and caused muscle and joint pain - as if there wasn't enough muscle pain with PMR! As for the fatigue - that was overwhelming!
This is what I am worrying about too ☹️ and the Infliximab infusion alone seems to have given me muscle pain and severe fatigue- on top of the fatigue I already had! So the prospect of adding methotrexate to the mix is frankly really scary. Plus now it looks as if I am going to have to shield all over again, just when I was beginning to venture out.
Hi. sorry u have been in the wars. The only way I and my fellow sufferers reduce Pred is DEAD SLOW otherwise may get flares. I personally don't know about mixing with the 'new kids on the block ' drugs. I took Methotrexate with Pred but had no benefit after over a year so stopped it and carried on with the dead slow reduction of Pred. Hope the new drug works for you. Keep us posted.
Hi. Yes - I agree with you. Dead slow is definitely the way I believe in.
It’s no good sorting the Crohns and then finding I have a flare of the PMR and GCA, and I really don’t want to be on two biologic drugs either. I don’t even like taking paracetamol unless I really have to!
I feel as if I am between a rock and a hard place!
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