I have GCA since 2011 and have been on prednisone since then, 13 years. I am at 20 mg and have been for quite some time but need to get lower or off of pred if I can. The problem is, is that 5 doctors are trying to get me to take methotrexate to get off the prednisone. My question is: why can't I taper and get off pred myself without methotrexate? I do not want to take it and they are almost bullying me to take it. I just don't want another drug in my system and the side effects of this drug is awful too, I realize not nearly as many side effects as pred but I don't want to add any more. What does methotrexate help? I know it was used as a a chemo drug so is it for pain or RA (which I have too) or anything at all to do with GCA or PMR?
I have PMRpro's slow tapering plan and am going to start tomorrow. Please help me understand why the doctors are so adamant for me to take this other drug. Thanks so much for your help.
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Sally001
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My question is: why can't I taper and get off pred myself without methotrexate?
Unfortunately if you haven’t managed to get lower than 20mg after all this time, then no wonder the doctors are trying to introduce another medication which may help you to lower the Pred. MTX is used as a steroid sparer, it works very well for some, but not everyone - and you won’t know until you try.
Can you explain why you are having so much problem with your GCA - it’s rare for it to last as long as yours… but if it’s a relapsing type then you might be eligible for Actemra/Tocilizumab. However, you may have to try other cheaper alternative drugs first. Not sure procedure in Canada re this….but guess your Medicare [or whatever] has an input.
Other Canadian members may be able to give you more info….
Hello Sally001. I'm not an expert on this subject by any means, and there are some on this wonderful forum, but what I've learned from reading here and in other sources is that methotrexate isn't very effective for GCA. I've had it for 9 months and after initial high pred. I was started on Tocilizumab abbreviated as TCZ. I began a taper, and with TCZ I'm currently managing on 4.5 mg of pred and am continuing to slowly taper. Some people can get off pred entirely on TCZ. Others may need to continue pred. but at a much lower dose than they were taking. I'm wondering why none of those 5 doctors have discussed TCZ with you. Ask them about it!
Well it is fairly obvious that you are unlikely to do it on your own if you haven't already succeeded in 13 years. And to be honest I'm surprised it is only now that they are getting so antsy about it and trying to get you to try something else.
How has the dose of pred varied over the 13 years? What are your symptoms that require 20mg at this stage?
It is more than possible that this isn't JUST GCA - other things can cause similar symptoms including some inflammatory arthritides and MTX is the first line there. Have you been investigated for Large Vessel Vasculitis? It is somewhere between cranial GCA and PMR and both PMR and LVV can rumble along without burning out for much longer than is usual for cranial GCA. I have a version like that though it has only ever caused PMR type symptoms but a few years ago I was needing increasing doses of pred to manage the symptoms and function as a single carer for my husband. MTX had made me so fatigued that that wasn't an option so my rheumy started me on Actemra and I was able to reduce from 19 to 7mg pred but I can't get lower without bicep tendinitis making using my hands and arms unusable - not at all practical when you live alone!! Can't even make a cup of tea! But I live in Italy and they are very generous with funding a drug that your doctor thinks is useful - with a lot of paperwork depending on your diagnosis.
Even if it is GCA, the obvious additional medication would be Actemra which works in almost all GCA but even it only gets half of patients entirely off GCA while reducing the pred dose a LOT for the other half. But as a biologic, it is very expensive and some medical systems insist on you "failing" a traditional DMARD like MTX before they will fund Actemra. In the UK they even limit its use to one year - which is patently not enough because patients promptly relapse and work is ongoing to get that changed. But you have to go through the procedure to get the reward. That may well be the case in Canada, it may even vary from state to state. I'm not sure if any other Canadians on the forum are on Acatmra/TCZ. Maybe your doctors are not subject to that - or maybe that is behind their intentions. Only they can tell you that. So ask.
As I mentioned to Dorset Lady, I got down to 4 mg of pred in 2017 when my GCA was in remission, had a relapse 2019 and I'm back to 20 mg, my GCA has been up and down since then. No I haven't been tested for Large Vessel Vacilitis but will check it out. I'm sorry to hear that you had so much pain but am glad that Actemra helped you. Are you still still on Actemra and pred? My neurologist told me about Actemra and told me that it's expensive but left it at that and didn't specify how much it would cost. I am just tired of drugs in my system and don't want anymore if possible. No one told me about the side effects of pred and that I should be on them short-term back 13 years ago. I have so many side effects and just want off of them. This is why I read everything about the side effects of drugs now and my quality of life hasn't been the greatest for the past 13 years and adding MTX will only make it worse. I started reducing pred today, which is Jan. 12th, I dropped from 20 mg to 15mg and am using your slow tapering program. After 4 weeks can I reduce by another 5 mg to 10mg, and once I get to 10 mg should I then decrease by 1 mg? I should tell you that I have OA and have been waiting for hip replacement surgery subce /feb, 2924, Is this a reason why my Rhuemy wants me on MTX so bad? I'm no trying to be hard to get a long with, with the doctors, I'm just fed up with the drugs and side effects. I honestly don't know what to do. Thank you PMRpro for all your help.
"adding MTX will only make it worse" - you don't know that, you can only find out by trying it as I did. Many people take it with absolutely no problems at all. Everyone is different.
I can't see a reply to DL - are you sure you posted it? If your GCA was in remission - why didn't you get off pred not remainon 4mg? That is plenty to control inflammation from still active GCA so it is possible it was never really gone.
I am still on pred and Actemra - and will probably be on pred for life, Actemra, who knows, but it seems clear the PMR is still active.
Why have you remained on and around 20mg for so long? Do you usually try to reduce 5mg at a time? Few patients would manage that below 20mg as the change in dose is quite a lot for the body to tolerate and the results often mimic the disorder the pred is being taken to manage. So doctors and patients panic and go back to a higher dose before repeating the mistake and it becomes self-perpetuating.
I don't know in particular why they want you on MTX so badly but most rheumatologists would have tried it long ago with such a long history of pred. It is unlikely most surgeons would operate at as high a dose as 20mg because the risk of infection would be increased. So if you need surgery - you probably will need to reduce the pred dose somehow
What are your problems with side effects? Some of the symptoms blamed on pred can also occur with PMR/GCA without pred or just due to aging. One study found that apart from cataract, the same complaints were found in matched groups of patients whether they were on pred or not. Most side effects of pred can be mitigated or avoided when you know how and this is discussed quite often on the forum. Maybe people can suggest ways of helping the,
And the bottom line is always that whatever the side effects of pred, none of them are as bad as the potential worst case scenario in GCA: total and irreversible loss of vision.
When my Opthamologist heard I was on pred for 13 years he said "I'm surprised you're not dead." Wow, what a thing to say. I have remained on 20 mg of pred because my neurologist and rhuemy threw me to the wolves when I said no to MTX. When I had a relapse in 2017 I went to see my neurologist and he wouldn't see me. All I asked was how much pred I should take (I was at 4 mg) because I was afraid of losing my sight. He wouldn't come out to talk to me. I called my GP and he asked what the doctor had prescribed before and I said 60 mg for 5 days so that's what I did. Then I yo-yoed the pred and stayed at 20 mg because I didn't know what to do. Last year I had a mini stroke in my right eye which damaged the optic nerve. I can still see out of that eye but it is blotchy. I get injections in my eye once a month now. I really hope my eye goes back to normal, the Retina Surgeon thinks the stroke was caused by the pred and doesn't think it will go back to normal but I'd love to prove him wrong.
The side effects from pred that I have is a moon face, bloated belly, arms look like crepe paper, loss of bone density, loss of teeth and, hair loss. But all and all I would rather stay on pred than take another drug. I'm just scared and really don't know what to do.
Charming - so empathetic. Contrary to some people's beliefs pred does not usually kill, it often saves lives and you have been very poorly served by your doctors. I have heard some real horror stories from Canada. I too have been on pred for 15 years - no sign of death yet ...
It is equally as likely that GCA was the underlying cause of that stroke if you were flaring and not on enough pred.
Have you ever been advised to cut carbs to help manage the weight gain and indirectly the places the fat depositis with pred?
I agree, it is really difficult to find a good doctor these days. I am looking into finding another neurologist. Thank you for saying that it wasn't my fault, that makes me feel a lot better. I just wish I would've had guidance and maybe this would've happened.
Yes I did cut carbs for quite awhile and lost 27 pounds but lately I've been cheating and put back some pounds. I will get down in weight again.
I am horrified at how little guidance many doctors are providing - they write a prescription and leave patients to it. It isn't really our place to have to explain much of what we do but no-one else is there to do it.
I agree and it's a scary feeling left to figure out what to do. My GP has put in a referral to another neurologist and am just waiting to hear back from one.
I see halo's and black dots occasionally and white shards out of my right eye that I had the mini stroke in. I am not sure I should be tapering right now. Maybe my dose at 20 mg is too low right now? I don't know. Thanks PMRpro.
Extremely unprofessional - so new doctor time. Hopefully one who isn't so intransigent. If it were Actemra that was being offered I could understand her pique - but MTX has very little backing in GCA.
I live in the US and take Actemra and prednisone for my GCA. My Medicare Advantage insurance plan pays most of the cost for the Actemra. I have seen various insurance documents indicating the cost of the Actemra for weekly injections is $65,000 US per year. If your insurance doesn't cover the cost or only partially covers it, there are several sources of financial assistance or copay assistance, depending on your income.
The financial assistance only applies in the USA - where there are statutory health care systems, it cannot be applied for. Sally is in Canada.
The price of Actemra has fallen somewhat since the biosimilar came on the market but there isn't enough competition as yet for as much of a difference as is seen with the anti-TNF medications.
I did a little more investigation. Joint Effort is a Roche patient program for Actemra. Here is a link to Roche's patient support programs in Canada - rochecanada.com/contact/pat...
What does Actemra do? Why do you take it with pred. I just need to understand why doctors are always suggesting other drugs to take with pred. Thank you.
Actemra is a biologic drug that works on the most common cause of the inflammation in GCA - there are more than one - and that means you need much less pred to manage the symptoms, some patients are able to get off pred altogether.
Doctors seem to have an inbuilt fear of using corticosteroids - they do have a lot of adverse effects but most can be managed or mitigated when you know how but they don't look at it that way. They are taught to use as little as possible for as short a time as possible so when they meet PMR and GCA where pred has been the only option until relatively recently, when they see a way of getting the patient to a lower dose or preferably off it altogether they push very hard. You are a typical example - you have been on pred a very long time, you have listed a load of adverse effects and they can only see you need to get off it.
The fact previous management has been poor makes it all worse but they really do want you to get off the pred.
As PMRpro says, Actemra helps you to get to a lower dose or off of corticosteroids. I much prefer the Actemra, because it has very few side effects compared to prednisone. I'm not a big fan of injecting myself weekly with the Actemra, but it's well worth the benefit. Actemra can also be administered with a monthly infusion.
“It (Actemera) has fewer side effects than prednisone “ I recently started a different biologic for PMR. KEVZARA. Here in the US both Actemara and KEVZARA have Black Box Warnings. And certain blood tests must be performed before taking them. Prednisone doesn’t have a serious warning , and we just start taking it. I’m not saying that prednisone doesn’t have side effects but I don’t understand why it doesn’t have a serious warning if it’s so dangerous.
I didn't realize that as I haven't researched Actemra yet. I just want to know if I can get off pred myself without adding another drug or do I need another drug to curb the GCA. Thanks for your feedback..
My thought is, if there is underlying inflammation some drug , in our case prednisone reduces the inflammation. And after a period of time, sometimes months and sometimes years, if the prednisone cannot be reduced then yes another drug will be suggested In addition to the prednisone with hopes that you can reduce your prednisone. Hope the best
Many of us (in UK in particular) have managed to get through our GCA successfully on Pred without Actemra or any other drug.
It wasn’t authorised for use in UK for GCA until 2018 -and because of the way the initial trial was carried out only for a 12 month period. Not authorised for use in PMR.
We know Pred works for the vast majority in GCA -Actemra isn’t so successful for all patients.
As we know all medication has side effects, it’s a matter of weighing up how serious they are to certain individuals.
I can see from US sites, the black box warning for Actemra is as follows -
Patients treated with ACTEMRA are at increased risk for developing serious infections that may lead to hospitalization or death, including tuberculosis (TB), bacterial, invasive fungal, viral, or other opportunistic infections. If a serious infection develops, interrupt ACTEMRA until the infection is controlled.
Kevzara has similar regarding TB and serious infections.
Prednisone has no BB warning… the FDA does say it has serious side effects, but doesn’t consider it is ‘dangerous’.
Unfortunately nowadays due to litigation issues, all medication manufacturers have to list every conceivable side effect of the drug.
For Pred I think someone once said there are 80 odd… but only a few affect most people. The same may well apply for Actemra and Kevzara - but as I said according to FDA, there are BB warnings on the last two but not Pred.
So you have to consider what is the best way for you.
Even paracetamol/acetaminophen and ibuprofen have black box warnings. Black box warnings do not mean the drug is inherently dangerous, it means that there are certain things to be avoided or looked out for and if that is done, it won't be dangerous. There are over 400 medications with such warnings.
If after 13 years you are still on pred I think it is fairly obvious you aren't going to get of it on your own. And THAT is why your doctors would like you to try other options what have, in fairness, been successful in other patients.
At some point you are going to meet a doctor who won't take you on if you won't even countenance another drug.
, this is not directly related to GCA but methotrexate. Methotrexate is often given to people with breast cancer. My friend, who is now 92, was relieved of her awful hand psoriasis permanently, as a side effect of methotrexate.
Ha. My doctors refuse to give me methotrexate or DMARDs. They say they have even worse side effects than prednisone. They also talk about patients who become dependent on prednisone. They say prednisone helps many things as well as PMR. Aches and pains from old injuries. Annoying joint aches etc. So I wander up and down on the dose with the goal of stopping, but because I've had a recent flare they say I'm a year away at least. Sigh....
So I wander up and down on the dose with the goal of stopping, but because I've had a recent flare they say I'm a year away at least.
Your goal should always be to find the lowest dose on any given day that gives you same relief as the initial dose did.
Your GCA is a self limiting disease so it will decide when you can stop Pred -not you nor your doctors. And TBH they cannot say how long away that will be- irrespective of recent flare.
Wandering up and down your dose is probably just going to make the whole process longer -you need to reduce slowly and steadily.. not bounce about😊
So I spent over a year tapering down from 40 mg. Under 20 mg I did 1mg a month taper. Under 10mg half a mg a month. Soon as I got to 6mg bingo, all the original symptoms came back in a big way. So now I'm tapering again from 20mg. Sigh. I think if I can get down to 7mg again I will stay there for ages. This support group very helpful in many ways.
Oh. That was tough for you. It was very disappointing to me to find out I was not going to be one of the lucky ones. Now I wonder if will ever be normal again.
I think it is time you found a new doctor! Are these rheumatologists? They need to use DMARDs every day for inflammatory arthritis. They MIGHT have unpleasant adverse effects but many people take MTX without any problems and very effectively, you have to try to see which group you belong to - and you have to try it to find out not only that but also whether you are one of the group for whom it works brilliantly in GCA/PMR. I'm not AGAINST MTX, but there must be a threshold for discontinuing it if you can't tolerate it or it does nothing,
It is also untrue that pred helps old age or any old joint pain - if pred helps, it is because INFLAMMATION was involved. It is not a pain-killer except where it relieves inflammation that is causing the pain. They obviously haven't much idea - if you are "wandering up and down on the dose" there is something not right - probably you are not tapering in a way that won't cause flares, bad tapering is the main reason for flares occurring, or this may not even BE GCA/PMR, and you can't predict when GCA/PMR will stop, not even to say you won't get off pred for "at least a year"
Sally, you are right to listen to your instincts. I researched Methotrexate too. It is a drug used for cancer patients, but it also reduces inflammation. I refused to take it too. I started on prednesone a year ago at 20mg for PMR. I have tapered down to 4 mg over the past 6 months. I started taking Sulfasalazine for inflammation at the same time. It is a very old drug that has been around for many many years with very limited side effects. Hopefully the sulfasalazine will pick up where the prednsone left off. Trying to be at 0 prednsone by this spring and only on sulfasalazine rest of the way. My brother in law has been on sulfasalazine for over 12 years with no risks or side effects. You may want to look into it. Good luck, keep doing your research, and listen to your instincts.
It IS used for cancer patients but at a very different dosage in rheumatology so you really can't compare the uses.
And you should also be clear - sulphasalazine is about the same age as pred, and so is methotrexate. All developed around 1950. It doesn't have that many serious side effects but makes you sun sensitive - and it can trigger SLE. And has never been looked at for use in PMR although it is used in rheumatology.
Sally001. I assume you are being treated by a rheumatologist? If so, you should ask about getting a prescription for Actemra/Tocilizumab (TCZ), as others in this forum have suggested. I was diagnosed with GCA/LVV about 9 months ago and was given a prescription for TCZ right away because my symptoms were relatively severe. I live in Ontario Canada and do not pay anything for the drug because it is 100% covered by a combination of funding from my health care plan and the Ontario Drug Benefit (ODB) program. I assume other provinces in Canada have something similar to ODB. Your rheumatologist will send the prescription and justification to Roche, and a Roche rep will arrange the funding using whatever sources are available. You should be eligible to receive TCZ because GCA is a relapsing disease in your case. It should also help with your RA. You would not have been prescribed TCZ for your intial GCA outbreak in 2011 because it was not approved for treating GCA until 2017.
Hi Sally I live In Australia and have CGA since 2020. I too was on a high dose of Prednisolone for 2 years and my specialist encouraged me to try methotrexate injections. I have tolerated the methotrexate pretty well and am now on a dose of 5mg of prednisolone after a gradual taper of .5mg a month from 15mg.
My specialist is of the opinion that the current medication level is about the best I can expect for the time being. I have blood tests every 2 months to monitor my inflammation levels and my specialist will adjust my prednisolone levels if I experience a flare.
Hello Sally. I’m late to reply however felt my experience may resonate with you and hopefully be of some help. I am also from Canada (southwest Ontario) and have had PMR (not GCA) since 2018. I started on 20mg of pred and was able to taper down to 9mg in about a year, but got stuck at that dose for almost 2 years. At that point I started seeing a good rheumatologist out of St. Joseph hospital in London, Ontario. I started injectable MTX (25mg) in Jan/22 and have very few side effects (hair thinning), but I also was getting sick all winter with various viruses at that dose so dropped down to 15mg MTX and no problem since then. I’ve dropped pred dose down to 5mg, but recently have settled up to 6mg pred after going back to work after 6 years off. Like you, I also have OA in my knees and the MTX seems to help.
I’ve had excellent care from my GP throughout my journey, and my rheumy is also supportive and reasonable. I did, however, have a terrible experience with a rheumy early on, so I stopped seeing her after only 3 appointments. So I acknowledge there are some poor medical professionals out there.
I know of others here in Canada with GCA and who have used Actemra and either got off of pred altogether, or have lowered their pred dose down to 5mg where they maintain. I believe the related costs were covered so very little expense to them. Do you have additional coverage outside of your provincial coverage (ie: OHIP here in Ontario)?
Not everyone experiences all the side effects of MTX, I certainly don’t and as much as I feared adding another medication to my repertoire, I don’t regret trying. You won’t know unless you try. And it sounds like you are already experiencing several side effects on pred alone over so many years.
Where in Canada are you located? There is a directory you can access created by the CRA (Canadian Rheumatology Association)…here is the link:
I do hope you are able to find a good rheumy and come up with a plan moving forward….even if it means on-boarding another medication. Making decisions out of fear have never worked out well for me. Indeed taking pred and MTX, both of which I was terrified to try, actually gave me back a better quality of life. All the best.
Thank you for your advice and feedback, I appreciate it. I am from BC and I will check out the link you sent I'm not sure what t do at this point but a new doctor is a good start.
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