Hi all. I had a consult with my rheumatologist, which was really the first serious exploration of my physical state and medication routine since the pandemic began.
We agreed that it was time I stopped taking pred (I'm on a maintenance dose of 5mg). However, I do have real difficulty coming off it. My life is too busy with too many stresses (and I do my best to pace but it is often impossible) and fatigue/joint pains result. So she suggested methotrexate as a substitute to help me come off.
I would them be on 300mg hydroxy and 12mg per week of metho. Plus low-dose naltrexone. We then discussed whether pills or injections were better.
In any case, they will review my bloods and arrange a discussion about the med with a nurse.
So I'd really like to know your experiences with the drug - effectiveness, does it really help to come off pred, side effects, best route of taking.
And I'd be curious to know about how it affects the immune system as it is a chemo drug. My rheumy said pred is worse than metho in this respect.
In the seven years since I was diagnosed, this is the first time a change of regime has been suggested.
Thanks all.
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Treetop33
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How long have you been on pred - at any dose, and how long at 5mg?
The main problem you are likely to have will be the return of adrenal function to produce cortisol to replace the pred which has been providing the corticosteroid that is essential to the body to function. Methotrexate MAY help with the autoimmune symptoms and allow you to lower the pred in that context but that is the only assistance it provides for return of adrenal function and it takes time.
Five mg pred is loads to cause adrenal suppression, I would advise you ask for at least a basal cortisol level (cortisol measured on a sample taken between 9am and 1pm) to assess what your adrenal glands are doing at present. And if I understand your post, I'm assuming you have been on pred for a lot of the last 7 years? In that case, it could take you at least a year to get off pred and possibly longer.
Thanks. I've been on 5mg pred the entire time. Sometimes it has been more. Frequent bouts of Covid don't help as they cause inflammation. I did say to the rheumy that if I could book myself into a sanitorium for a year I could probably come off it.
I did have a baseline cortisol taken four years ago - pre-pandemic - which showed some function, albeit sub-optimal. But of course I'm in worse health now.
And it was 4 years ago. The adrenals do like their semi-holiday and can get increasingly reluctant to take up their duties again! Everyone on my home forum is on pred for a few years, sometimes longer so everyone goes through this. Some sail through it - many don't.
PMRpro has great points about your adrenal glands. I have been on steroids and Methotrexate. I would strongly recommend the injections, it will avoid any gastric side effects with the drug. The injections are through a pre loaded pen and very easy to administer. Methotrexate is used a lot in RA, so it does target joint inflammation. Some people do very well on it and find it helpful. Sadly, I was badly affected by fatigue as a result of the drug- battled for 8 months but had to come off it, so keep a careful diary about how you feel.
I am sure that they will carefully taper the steroids as Methotrexate, like many of the drugs used takes time to reach full effectiveness. There appears to be quite a big push to get people off steroids because of the concerns over long term consequences. I have pericarditis and possible pleurisy and although not well was encouraged not to use steroids but to accept that I would have to wait for the Azathioprine I was put on to work. Four weeks later, I feel like I am beginning to turn a corner.
It is great that they are thinking alternative meds for you as it is more in line with current guidance. Have you looked at the British Rheumatology Society guidance for Lupus? It is really worth the read - but read the review remit as it is currently being revised. Hope that helps a little - good luck.
I have been on 25 mg via inject for the last year. I began at 7.5mg 3 years ago and spent the year escalating to 22.5mg.
The first week I spent the first night vomiting. My rheumatologist prescribed an anti-nausea medicine Ondansetron/Zofran which I used sporadically as each time I escalated the dose I did experience some nausea after the injection. Since my dose has stabilized I haven’t needed the Zofran. I have had hair loss whether just Luous or from the methotrexate I am not sure. Since the beginning I was prescribed daily 1mg of folic acid. When my dosage reached 22.5 she qaddes a once weekly dose of 25mg of Leucovorin to further help hair loss and/or nausea.
I have found the methotrexate extremely helpful for the pretty significant joint pain I experienced. It has also helped my fatigue because frankly the joint pain led to loss of sleep. I escalated over a year with monthly bloodwork of CBC/Metabolic panel until dose stabilized now I see my rheumatologist for this bloodwork and consultation every 3-4 months.
My rheumatologist has repeatedly said with the correct monitoring methotrexate is the safest drug that I can take (safer then azathioprene and definitely safer than prednisone. If I had not been able to tolerate methotrexate she would have prescribed a trial of azathioprene and then after that Benlysta.
I also take 300mg plaquenil/hydroxychloroquine and 4.5mg LDN as well as 81mg aspirin (elevated antiphosoholipids.
Prior to the methotrexate I took 5mg prednisone which she wanted tapered and ended up on 2mg for a few years. The rheum definitely wanted me to stop prednisone and move to methotrexate.
I was on prednisolone (5-20 mg daily with occasional larger doses) for more than 6 years when I was first diagnosed. It was horrible coming off it - I reduced very slowly but even so, the last 5mg was a massive deal. I am glad to be off it and now hate it is anyone suggests I should take steroids even short term for anything.
Long term effects for me (that I know about) were cataracts in both eyes (now thankfully fixed). Weight gain (eight years later I have lost three stones but still not quite back to where I would like to be). And thin skin (which sounds like nothing - but is super-problematic. I bleed and bruise really easily; the slightest knock breaks my skin and takes absolutely ages to heal.
I know some people find it impossible to get off steroids (so don't beat yourself up if you can't manage it) - but I am glad I did it even though it was hard. I now take 2 g Cellcept daily and 400mg hydroxychloroqine for the lupus. I'm not the version of myself I was before lupus - but I have a decent life.
Best drug I've taken for lupus. Needs to be taken on an empty stomach. A lot more expensive than MTX. My experience is that I had to get very unwell before they unlocked the good drugs!
Is Cellcept a trade name for mycophenolate mofetil? My understanding is that you need to have been on this drug before they will put you on Biologics. I wonder if the new guidelines will put an end to this drug pyramid, enabling our Drs to prescribe the best drug first. It was a toss up for me between Azathioprine and MM.
What I say is, roll on stem cell transplants (I think that's what they are called). Apparently early trials suggest a cure, not just disease management.
I posted about this a little while ago. It’s certainly looks like long-term remission. Let’s hope it comes quickly and that they actually think it is worth spending the money on making us better.
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