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PMRGCAuk
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DMARDS

As the side effects of steroids are my - and lots of others - big problem in Coping with GCA - my question is - why are people not automatically put on steroid sparing agents like

Methotrexate or azathioprone? Hence avoid insomnia and moon face and weight?

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Because they are extremely strong drugs in their own right and need careful monitoring. I am PMRPRO will provide you with a fuller answer

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There is a point to that as if dmards are going going to work more effectively the earlier prescribed the better. However as I understand the protocol for my dmard (for PMR) is that it allows some reduction of pred. I have been on pred for PMR for 4 yes in June and started mycophenolate about 12mths ago. That drug came with its own set of side effects including skin cancer so you have to use sunscreen. I had nausea, stomach pain, insomnia and when I got flu it was really bad. They forgot to tell me to stop them if I I got an infection. Even with the dmard I am still at 6mg of pred. Dmards are there for different aspect and I know more about my own. Sorry ...or youll be pleased to know my brain has slipped into stupid mode. Good night.

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Well these are strong drugs with their own side effects and may not suit everyone. Each person needs to be evaluated according to symptoms and needs. MTX is used to help reduce Pred and at first the Consultant will need to see how the patient is going to react to the Pred. Also MTX can make some people feel very bad while others may react well to it. So really MTX can’t be started until the optimal Pred dose is found and the patient’s reactions are properly evaluated. Once the Pred dose is stabilised and a reduction regime put in place, then the MTX can be introduced if desired.

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They are far from benign. Moon face is temporary, weight gain is very avoidable and insomnia can be managed and wears off with dose. They do help some people but I don’t see them as an easy option.

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Hi Gracie

DMARDS are not really a simple or easy option & Pred is well recognised as the best treatment at this time for both PMR & GCA

Also, DMARDS do not work immediately, so for GCA when getting the inflammation down ASAP Prednisolone is the ‘Go To Option’.

DAMARDS can only be prescribed by a Consultant, you need monthly blood tests & monitoring but they can be hard on your body & not everyone can tolerate them.

If you run into problems reducing the steroid dose then they are considered as a ‘Steroid Sparer’ of which l’ve had experience.

I hope that helps you a little & if you have any more questions, one of us will be able to help.

Kind Regards

MrsN

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I had to build up over 7 weeks of dmard to full dose. I'm still 50/50 with it but it seems to have kept ESR etc down. I had raised markers almost immediately they reduced steroids but it has held steady for past 12mths.

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It does thank you . Will avoid and just get on with the steroids. Defo don’t want to add another lot of side effects!

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Wise decision

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Since MTX can take up to 6 months to reach theraputic levels, a GCA patient runs a real risk of going blind or having a stoke waiting for it to take effect, if it does at all. There hasn't been any study that convincingly shows MTX is effective in treating GCA or PMR, or even serves well as a steroid sparer for most patients.

The pred side effects you mention are transitory. You can manage weight gain by eliminating unnecessary carbohydrates from your diet. I found eliminating caffeine from my diet helped manage the insomnia, although I've never been the world champion sleeper. 4-6 hours does it for me. After the first couple of weeks taking pred at 20 mg for my PMR, I wasn't unusual for me to be awake for 24-36 hours at a stretch a couple of days a week. Skipping coffee, tea and coke helped with that a lot, and the problem pretty much resolved itself as I tapered the dose.

Historically, cataracts have been cited as a risk, but more recent studies adjusted for age show pred users are not at a statistically significant risk compared to non-users in the same age range. Cataracts are easily cured with a simple 20 minute procedure that is one of the most commonly performed and successful operations on the planet.

That leaves osteoporosis as the remaining major risk of pred, which can be managed by consciously consuming calcium rich foods in your diet and adding calcium supplements and vitamin D3.

Yes, chubby fuzzy cheeks and the pred hump and pred belly are not wonderful, but they are transitory and they go away as your dose decreases.

What is wonderful is saving your sight, not having a stroke, and avoiding permanent damage to small and large blood vessels (including the aorta) due to uncontrolled inflammation. That's a pretty good trade off against the cosmetic issues that eventually go away.

Maybe someday they'll have a biologic or DMARD specifically targeted for GCA/PMR. Right now, they don't. The biologics and DMARDS they have now are targeted for rheumatoid arthritis and other autoimmune conditions (which actually may be why the are effective for some people diagnosed with PMR because you can have RA without the RA factor showing up in your bloodwork). And DMARDS and biologics carry significant risks of their own.

Keep searching and frequenting this site and you'll find a wealth of accumulated wisdom about your condition, about taking and reducing pred, along with tips and tricks that others have used to help themselves while doing no harm.

Best wishes to you on your journey...

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I eliminated carbs and still gained 25 pounds. A lot of the weight gain may be water reduction. I never used caffeine and became a complete insomniac. I did find some supplements that helped somewhat.

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Did you eliminate almost all salt? That was my other downfall if I wasn’t strict.

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Yes. Low to nearly no salt

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We're all different, as is our tolerance for any treatment.

Sorry you're having trouble sleeping. When I do, I get up, find a little something physical that I can do quietly without waking the house, then grab a book and head for the couch with a comforter and the TV remote. I just don't worry about it, because I know sleep will come when I need it.

As for the weight gain, I didn't gain as much, but what I did gain melted away on its own as I tapered. Something has changed, though. My chest remains convex instead of concave for the first time in my life. It's so funny to have cleavage for the first time at 63!

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Ha ha! Funny one your bust - if it went on there for me I’d be perfectly happy as am 4 yrs since I had lumpectomy for breast cancer so could do with a bit more in that department!

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I stopped gaining weight around 15 or 20 mg. Now down to 5 and I have lost a couple of pounds

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I might consider them if I knew they definitely calmed the root of the autoimmune process or if my GCA became refractory.

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Thanks - I’m not going down the steroid sparing route now - I have bronchiectasis which means I have to be careful about chest infections - I tho k I would be more exposed to infection on that drug. ... fuzzy face is a new one on me as side effect! I’m brisk walking for 40 mins 6 days a week on an effort to keep weight in control and careful about my diet

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Hi Graciesimp,

Im new to this page but not new to ailments.

I have been on azathriapin for 1 1/2 years due to autoimmune liver diseases. So unsure how helpful it has been to me as now i am sufferring from PMR symptoms and been put on steroids.

As much as i am thankful that tge azathriapin had helped with my liver so much i am still going to get blood taken every month, sometimes more.

As i say i am new to PMR and do not know enough about the disease only my situation with meds.

Take care

Angela

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DMARDs are not magic bullets. In my case I feel that it is the least worst option, and I think that is the view of my doctors. I have had bad side effects from the pred, sepsis which was more frightening for my family than for me and cataracts, these developed very quickly - from slightly fuzzy to effectively blind in about 3 weeks, not just ageing I think. The worst is osteoporosis I am now crippled by vertebral fractures and whatever the reason for the osteoporosis pred is going to make it worse.

I am on my third DMARD and it has allowed me to reduce by about 5mg to around 10. However I have had terrible colds and flu in spite of stopping azathioprine for the duration and the coughing seems to have caused more fractures. I am a little worried about small skin lesions but GP is reassuring although she did measure them!

Some doctors, in the US, seem to prescribe methotrexate early on, in UK this doesn't seem to happen.

Like all treatments you have to decide on what to do based on informed advice from your doctors and your own situation. The only certainty in this is that GCA is a horrible disease!

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Azathriapin is a very potent DMARD medication.

Prednisone is the only treatment which will keep pmr and GCA under control.

DMARDs are sometimes prescribed whilst taking Prednisone, to help the patient to cope with the pains when reducing prednisone....many of us suffer withdrawal symptoms which can imitate the actual pmr symptoms..It's the body telling us that we getting use to the lower doses.

I find it pays out to try and cope with the pains when reducing Prednisone as I have found after an hour on my feet in the morning, they disappear.

Don't give in to the pains dear folks, you can fight them ...take a couple of paracetamol to help.

YuliK age 76.

I have managed to arrive to 6mg. Bit uncomfortable but coping with the help of paracetamol.

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I agree with all the above. I have tried 3 DMARDs and none of them prevented me from flaring. One gave me very high blood pressure. There is no valid evidence that they will work. Their use has to be a personal choice because of the pros and cons. The most important thing to remember is that they don’t replace the pred. They are used with it, so you can’t necessarily get off the pred. with all its side effects.

Regarding the insomnia, this has been my worst side effect and I found taking amitriptyline at night has helped a lot with that.

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My sister has tried 3 DMARD`s for RA, they can take up to 3 months to work, so not so good as pred for us in that respect........

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With our diseases the only effective drug for reducing inflammation , pain and stiffness is Prednisalone. The theory is that in some people, drugs like Methotrexate enable us to reduce the Prednisalone more quickly. I imagine that they can make the withdrawal symptoms less troublesome. As Dovelady says they come with a whole host of significant side effects themselves. They would not address the main components of the disease taken on their own. Methotrexate is an arthritis drug and has not been subject to a significant trial for GCA/PMR. My own Rheumatologist says that most Rheumatologist’s would rather be on Methotrexate than Prednisalone. Some people who post on here have been greatly helped in their reduction of steroids with the use of these steroid sparers. Personally, I would rather cope with low dose Prednisalone than add in other drugs.

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Because they don't work the way the theory (and some rheumies) suggests. They ARE used pretty much automatically in a couple of countries and by some doctors. They MAY allow you to manage on a few mg less - but once you are at below 10mg does it really matter if you are on 6mg or 9mg? They MAY make the reduction process smoother - but we maintain that a careful slow and steady reduction will do that too for most people.

There is no clinical trial evidence for aza at all, there are 3 weak studies for mtx which all came to different conclusions. The one which DID suggest that after about a year there was difference in total amount of steroid taken, found when they did a follow-up after 5 years that while there may have been a lower total amount of steroid taken there was no difference in the incidence of adverse effects. Therefore - why bother adding an unnecessary layer of side effects? They are considerable and immunologists are very concerned that using another immunosuppressant alongside pred is increasing the longterm risk of developing other immune system problems, including cancers.

I tried methotrexate last summer. I have been on pred for well over 9 years, currently I have absolutely no problems with pred, no real weight problem, no moonface at all, maintain my weight and sleep well as well as having no identifiable adverse effects. During the month I took mtx I gained 2lbs in weight, was constantly hungry, had joint and muscle aches and pain, slept badly, my hair fell out in chunks and I was so tired it wasn't true. The mtx magnified what are claimed to be pred side effects I hadn't had before. It has taken me months to lose that weight,

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As a person with PMR who couldn't tolerate the preds i often wonder why every one puts up with the side effects and doesn't try and cope without them? Yes it's not easy but obviously neither it seems is it easy to take them with all their side effects. I was advised by my rheumatologist to try Cannabis oil, the CBD not the one you get high on! This helps me cope as well as my Homeopathic treatment. And no side effects to deal with! As most of the posts on here seem to be the side effects of preds and how to cope with reduction why not try something else? A year on I am now glad i didn't take them!

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Oh Rabbit

I feel you’re about to get some very strong reaction to this.......

What about the risks of untreated inflammation giving rise to GCA at the possible cost of your sight?

Most people on here were totally debilitated & almost unable to move/dress themselves or perform simple daily tasks.

I can’t say l’ve heard of a Rheumatologist recommending CBD Oil as a Treatment specifically & will be interested to hear other Members Opinions.

MrsN

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I have done it - not out of choice - and I totally disagree with you.

I spent 5 years with PMR and no pred before a sceptical rheumy gave me 6 weeks pred to help me through a trip to the USA. In under 6 hours I could manage stairs like an adult and not a toddler, one step at a time, and had immeasurably less pain.

Since then I have been on pred for well over 9 years, I have had some bad adverse effects when I was on Medrol but even then there was never a time I considered saying no more pred. A few months before finally getting pred I had been stopped from driving - wrongly as it turned out - and I was near enough housebound, I realised that I hadn't been able to go anywhere without driving to the door and if I couldn't park, I had to go home. I was isolated, in constant pain, I couldn't sleep or sit comfortably and hobbies of any sort were out the window. I struggled to make meals and housework just got left. I was depressed and very unhappy. Married life took a nosedive in every way.

Then add the risks you leave yourself open to. Untreated PMR is 7 times more likely to progress to GCA - and then you have a real no-brainer: high dose pred or risk going blind. Most people who have severe side effects are on high doses for GCA but in most cases their side effects are minor or acceptable compared with the ultimate side effect of GCA. Once one eye has gone there is a 50/50 chance of the second going in the next 2 weeks. So there isn't time to mess about with alternative concepts which have no proof of success. Pred does - that is why it is used.

Long term even low-level inflammation also increases the risks of developing cardiovascular disease, peripheral vascular disease and cancer. All of which don't have too shiny prognoses and don't improve quality of life even if they don't shorten it.

I'll accept everything pred has thrown at me in comparison to that possibility.

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Couldn’t get out of bed never mind go to even see anybody. Love pred , so glad its available as nothing else worked .

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I have GCA with initial blood markers that were alarming. Without Prednisolone I would have gone blind, had a stroke or be dead. I have subsequently tried CBD for pain and it didn’t touch the sides.

Research confirms that there is no choice. If something else has worked for you I am delighted however, are you certain of your diagnosis? None of us are happy to be on steroids but are not prepared to take the risk without it.

Take care

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I just know i couldn't tolerate Prednisolone so there was no choice for me but i dont have GCA so don't have that problem to deal with (as yet!) and no i am not sure i have PMR but that is the diagnosis i have been given for a year and yes now they are starting to doubt it but have no other ideas. Yes there are days when i can't get out of bed and my whole life has changed but i have no choice. The CBD comes in varying strength and takes time to build up in your system before it helps but I can't cope without it. It's what gets me up in the morning and keeps me going through the day

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If it’s not PMR that is a different situation perhaps you seek a second option. Diagnosis is made on your inflammatory markers and physical symptoms. I wouldn’t be taking steroids if there was no definitive diagnosis

Take care

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As EW says, if it isn't PMR that is another question altogether. But that is no ground for you to suggest to people they shouldn't take pred but use CBD - which you then go on to admit doesn't provide the relief most of us need, I was still working with PMR and so are many others. Even if they don't have paid employment they have other things that need their attention. I and many others could barely dress ourselves or even toilet ourselves at times. You may be in a position to stay in bed on bad days - not all of us are. And frankly - it isn't as if we LIKE taking steroids.

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Sorry I think you are misunderstanding my comments! I could not tolerate preds so had no choice but to search for something else. NHS has no other suggestions. So i was left to get on with it on my own! I am not suggesting people should not use preds and try canabis instead just saying what i have had to do in order to cope day to day. Many of the posts on here seem to be about the problems of preds and reducing so just wondered why you are all struggling with a medication which from my point of view seems to cause so many problems? I didnt have a choice and couldnt take it so just wondering why / what are the reasons for doing so if it causes so many problems?

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Which I think has been addressed!! Sorry - but the first post you put up sounded very much as if you were advocating an approach that has no backing and doesn't actually do what you at first appeared to say - make PMR livable with.

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That's not what I meant you have obviously misunderstood my comments

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