Pmr unable to take steroids

[Lellylam]

I was diagnosed with PMR a year ago and took steroids for 5 months when I was taken off as the mental side effects were unbearable. I basically had a complete breakdown and still suffer from horrendous anxiety. Was absolutely fine before. Pmr was under control with anti inflammatory but has now flared and am unable to take steroids. Any one else been on this position?

[SheffieldJane]

Oh you poor thing Lellylam. I wonder if you would be a special case for Tocilizumab? I would press my doctors for a solution to this. Talk about a rock or a hard place. For instance, would anxiety medication mitigate the ill effects of Pred?People certainly have been on who have experienced mental health problems and are worried about it being made worse by Pred. I do not recall anyone talking about a solution to Pred making them feel excessively anxious. I have certainly experience mild anxiety - the jitters, but not to an unbearable degree. Have you sought help for the anxiety? You shouldn’t have to battle this alone.

[Lellylam in reply to SheffieldJane]

Hi yes I am under a physiatrist as the pred triggered severe problems including phycosis. I am still suffering from acute anxiety and nothing seems to help.

[Hidden in reply to Lellylam]

I am not on the prednisone or painkillers but on LDNsince 2 months and just started on the target dose of 4,5 mg.

Pain levels are down from 7-8 to 2-3 for PMR

A very welcome side effect for most people, and also for me, is the higher adrenaline levels you get. I feel super, fatigue is out of the window and have lots of energy. Can handle my situation with ease despite some discomfort still left. Hope this might resolve over time, as it can take up to a year to get full effect.

I had a mayor depression and anxiety in the past and really regret it that I didn’t took LDN than as it has no serious negative side effects and is less harmful than Celebrex, aspirine or ibuprofen. It is of label, most doctors don’t know it and insurance won’t pay for it. I ordered it online from India without prescription for less than 20 euro cent per day of which half posting costs. I dilute Naltraxone 50 mg in 50 ml distilled water and take 4.5 ml per day oral to get the low dose. It works slow and not works for everyone. But for me, as someone who don’t want to make my situation worse with regular medication this is the best solution. More on youtube: ldn trust research. There are also facebook groups.

[PMRpro Ambassador in reply to Hidden]

And you are confident that your online purchase is pukka?

[Hidden in reply to PMRpro]

I did screening on the Pharmacy and they deliver the real stuff. They have a good reputation over their 12 years in the market.

[PMRpro Ambassador]

There was someone in the last couple of years who was also unable to take pred because of mental health problems - they were put on methotrexate but I really don't know how successful it was.

Someone else became psychotic as a result of being on high dose pred for GCA - there isn't much on the forum because it tended to be talked about privately and she herself was never on the forum. This lady's problem was in response to prednisolone but it was far better on methyl prednisolone for some reason. Then they were able to get funding for tocilizumab (in the UK so not easy) and that got her to a really low dose of steroids and she returned to normal.

I lived with PMR for 5 years without pred - and I didn't use NSAIDs either as they did nothing for the pain. It can be done - it isn't nice and I have no desire to go back there. It is a different matter from GCA - there isn't the threat of loss of vision without pred.

I started each morning with a trip to the gym and most mornings an aquafit class in a warm pool. I dressed in a swimsuit and joggers as soon as I got out of bed, I had about 10 minutes before I stiffened too much to do it. After the class I could move well enough to get dressed and manage a Pilates or a Iyengha yoga class which also helped and as the day went on I became more mobile. On days the aquafit class was later I went in the steam room or sauna - a hot shower and stretching also helps a lot.

[Lellylam in reply to PMRpro]

May I ask why you didn’t take pred? I have managed for the last 6 months but have had a flare and so afraid of developing GCA

[PMRpro Ambassador in reply to Lellylam]

I wasn't diagnosed and so wasn't offered it.

[Lellylam in reply to PMRpro]

Sorry to ask, it’s just that I’m a bit desperate. How come it wasn’t diagnosed ? Would you have taken pred?

[PMRpro Ambassador in reply to Lellylam]

Because I am one of the 20% who don't have blood markers that rise out of normal range. I complained of symptoms but there was nothing to be seen in blood tests. So a very nice but rather poor GP failed to see there was something wrong. "Your age" was mentioned - I was 51 at the start. I defied him to say it was "all in my head" so he didn't use those words. Instead of touring all the options at the practice I gave up. Eventually I had a major flare and at the same time I was stopped from driving for medical reasons - because a hospital doctor didn't listen to me. I was stuck at home without my car but I managed to get here to my appartment in Italy - where without stairs to cope with I was better able to get out. And for 3 months I searched online until I found a clue: PMR. Then I had to wait to see a rheumy who was also useless - but did give me 6 weeks of pred to get through a business trip. In less than 6 hours I was almost pain-free - and another GP listened properly and agreed it was very likely PMR, it would do her as a diagnosis.

Would I take pred? I do - what I need. Not going back there. I also appear to have a version of PMR that goes on and on and keeps flaring up. I've been on pred for nearly 12 years.

[Lellylam in reply to PMRpro]

Sorry I don’t understand. I thought you said you hadn’t taken pred. Then said you’d been on it for 12 years. I’m desperate to fined someone who has managed without. Do you still have PMR? Sorry got my confusion

[PMRpro Ambassador in reply to Lellylam]

I told you - I had PMR for 5 years before it was diagnosed. I wasn't offered pred, or anything else. I had to live without any treatment for that 5 years. Then I WAS given pred - it worked, and I have taken it since. I don't see that spending 5 years dealing with the effects of PMR without pred is any different from someone going the whole time without pred since according to many doctors it only lasts a couple of years.

You are very unlikely to find anyone on this forum who has managed all the way through their PMR without pred. Plenty arrive looking for alternatives but it is very rare for someone not to give in in despair and take it. Once they take it, there is rarely any looking back unless it is someone like you. The only reliable option for managing PMR is likely to be tocilizumab/Actemra but it isn't approved for PMR in the UK, you only get it for a year for difficult to treat GCA although it is hoped that will change.

There is one person on the forum who has switched to hydroxychloroquine and it seems to be working for him. And sometimes people take methotrexate and it improves things. But you won't find many who have recovered from PMR here, whether they did it with or without pred. They are away living life without PMR or pred.

[Pocketdog in reply to PMRpro]

Oh PMRPro - it's almost as if I started writing that myself. I firmly believe that PMR has been in the background for me for the last couple of years. Lots of pain and stiffness but went to the gym every day. Did a yoga class, spin if I could. Had to give up circuits, body pump and body attack a couple of years ago. This was followed by a quick swim, long jacuzzi and very long steam session. In March last year with the onset on lockdown and gyms closing my symptoms began to worsen until the final meltdown around Christmas time and possible PMR diagnosis in March this year. My blood markers have never been raised so went through other possibilities - ALWAYS it's your age dear!!! - and muscle spasms. The waiting list for referral to rheumatologist on NHS is infinite so am off tomorrow with fingers crossed for a consultation at a private hospital. Once again am so grateful for all the experience, knowledge and expertise of you brilliant people on this forum.

[PMRpro Ambassador in reply to Pocketdog]

Absolutely the same - for 9 months I went from struggling with arm movements in aerobic classes, to not being able to get on a step more than 4in high in a step class to simply not being able to keep up and then one min on the cross-trainer left me in agonies with thigh muscles. I switched to a gym with a pool but could only do aquafit, I could only swim backstroke and that was discouraged...

[Hosers2 in reply to PMRpro]

I assume PMRpro is referring to me. It was suggested by my ophthalmologist that Prednisone was possibly the cause of my Macular Degeneration which surfaced in January 2021. Both he, and my Rheumatologist recommended me switching to Hydroxychloroquine and Folic Acid.

Starting mid January, I quickly reduced my Prednisone by 1mg every 5-7 days, and I started taking Hydroxychloroquine at the same time. I completely eliminated Pred within 45 days (March 5th) and now manage the PMR with HCQ. Once a week, I take Methotrexate.

So far, I haven’t noticed any change in my PMR for the worse. I still have occasional stiffness in my wrists and fingers in the early morning wake up period. Also, my most recent blood tests all came back normal.

This alternative to Prednisone seems to be working.

[Mike364 in reply to PMRpro]

I too have been on Pred for over 12 years. After 11 years the Rheumy said I no longer had any pain markers and that therefore I no longer had PMR! I don't see him anymore although he was very nice. I got down to 4 mg/day and then things got bad again and so on my own initiative and after talking with another GP went back to 10mg. This seems to keep my in a "liveable" state but not good. I have constant pain and accept that I shall probably be on pred for the rest of my life. 12 years ago it seemed to me that in general GPs new nothing about PMR. However it does seem that in young professionals this is changing. I don't want to remain on pred but if it keeps me going then OK. I am 72. Unfortunately a 25 year old spinal fusion is playing up and I cannot stand for many minutes and walk only about 100 years - with sticks. Today I have ordered a mobility scooter which I did not want to as it admits that I am 'disabled'. However it means that I can go for walks with my wife and even walk round the town looking at shops - which I have not done for years. Kew Gardens and Wisley here we come! We both have E Bikes which I can manage as I am sitting down.

[PMRpro Ambassador in reply to Mike364]

We got a folding scooter for my husband a couple of months before he had an accident and then Covid arrived - it hasn't been used yet as it requires a lack of wind and a few thermal units before he'll go out except in the car! But we don't look at it as him being disabled, just not as abled as I am (not that that is saying much!) and it is as much for my benefit as his. Walking alone is not the most exciting pasttime.

[Lellylam]

Thanks for the reply. I’m in a bit of a tricky situation

[jinasc in reply to Lellylam]

Many moons ago a lady had the same problem who lived in Scotland. Eventually Professor Bhaskhar Dasgupta, the man who started this charity, came up with a solution.

I am blowed if I came remember what it was. I do know it sort of worked. Perhaps your medics could get in touch with him (Southend Hospital) and see what he has to say.

[piglette in reply to jinasc]

Didn't someone have IV or something like that?

[jinasc in reply to piglette]

I am trying to do some digging - the IV clicked a bell,

[PMRpro Ambassador in reply to jinasc]

I'd have thought he'd recommend leflunomide - he was very keen on it.

[Pollynolongerinagony]

hi Lellylam, what a nightmae you are living. This forum has thrown you a life line, do get in touch with Dr Dasguptar at Southend Hospital. I pray you will soon get the help you need. Maybe ring the hospital and get his email address. You are a very very important special case, and your sharing your story has broadened the exerience and knowledge for this forum. I do hope you will keep us posted on your path as none of us know what direction our PMR and Pred will take us in. Your experience is invaluable . Wishing you good luck, and never ever apologise for being confused, we are all in the same boat and understand how you must be feeling desperate and clutching at straws. Hope the fog clears and you can now see your way forward for he very best help and advice with Dr Dasguptar. Very best wishes and feeling realy hopeful for a good outcome for you, Polly

[Raewynne]

Hi LellylamI had a relapse of temporal arteritis and I was determined I didn't want to go on prednisolone again because of the terrible side effects with me.On medication that helped a bit was Gabapentin.

It didn't fix things so I ended up on Pred again but it may help you.You can only try..God bless

[Bubble56]

Hi Lellylam, I have just read your post with interest. I have had a lot more problems with my mental health since I started Pred 18 months ago. I am bipolar and struggle anyway but I have been in a psychiatric hospital twice in the last 18 months which is much more often than I usually am and right now struggling with terrible depression and anxiety which my medication is not helping as much as it normally does. Until I read your post I had never connected the two, you have really enlightened me and made me think hard about whether I want to continue on Pred😱. Thank you for bringing mental health issues to our attention, life with PMR can be a struggle enough without added problems. I wish you all the very best and hope you overcome your health problems very soon, I can truly empathise with you. 😘

[PMRpro Ambassador in reply to Bubble56]

Do discuss it with your psychiatrist - because unmanaged PMR can also cause a lot of mental health problems including mood swings and depression. I know it is between the devil and the deep blue sea but it also needs to be considered.

[PMRfacebook]

Hi there, sorry to hear about your experiences. I too suffered with really bad depression and anxiety when starting on pred . It was unlike any previous mental health episodes I had had previously. I did find that as the dosage reduced (below 10mh (i started on 15 mg) the symptoms eased somewhat. However now at 2mg feel they are returning- wonder whether it's adrenal impact .... who knows . You definitely need to seek help and support- good luck

[Bubble56 in reply to PMRfacebook]

Thank you for your replies, I do get a lot of help and support- I couldn’t survive without it. This forum is a massive help too- thank you yet again!