6 months ago when Rheumatology opened up again I was started on MTX with a reducing dose of Prednisolone.
I didn't have any side effects to speak of and I managed to get down to 5mg pred before the symptoms returned with a vengeance. Been off pred all together now for a couple of months and I can hardly move, the PMR is as bad as it has ever been, I'm so fed up.
My rheumy wouldn't let me go back on the pred and I'm to see her on the 16th. It seems so far away when you cant sleep or even move well.
Is it unreasonable to plead to be on 5mg pred forever? I get that it causes damage but I will accept the risk to get a life back.
Has anybody else had such a story and what did they try next ?
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Travs
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Hi Travs - can l ask why you continued reducing when the symptoms reappeared? As the aim is to reduce the dose of Pred to as low as possible to keep the symptoms at bay & again why did you stop the MTX when l read you were doing well on it? MrsN
Hi. Sorry I have confused you. I didnt stop the MTX Im still taking it. The Rheumy said I was to reduce 5mg a fortnight down to 10 then 1mg per fortnight down to zero so I did what I was told lol. Thanks for replying.
Im in the UK Mrs Nails. I hope my Rheumy follows the same rules you have, what a relief that would be. Im supposed to be starting a new job next week but I wont be able to unless I get this sorted. I was naughty yesterday I took 2.5 mg out of desperation and could move after just 1 hour. Dont think I will be admitting to it though lol.
I think that she is being unreasonable as you are suffering so much, also irresponsible as your PMR could become GCA. I think you need a new Rheumatologist to take charge of your case.
Hi Jane. Yes I hope she sees it that way too. I dont know which symptom to moan about the most, the pain, stiffness, brain fog, exhaustion ? I think I could fall asleep standing up in the afternoon. Standard stuff I suppose.As for GCA that ship has sailed I donated an artery in my head and was on 60mg pred just long enough to become diabetic.
Nevertheless, inflammation is not harmless though. Yes it is quite a ride. I am sorry that you’ve found yourself here. Like you, I would accept an indefinite low dose, maybe 2-3 mgs. As recommended for some patients by Professor Dasgupta.
Write it all down before your appointment, Travs; the pain, where you feel it, what it prevents you from doing (in detail), how it's impacting on your daily life, your sleep, your mood, your mental health,..........everything. 🤞🏼
There are too many doctors who seem to think that MTX replaces pred in PMR without ever stopping to consider that if that were the case then they would use it from the outset in their suspected PMR cases rather than the pred which all the experts in the field acknowledge is the mainstay of management of PMR and GCA.
It also takes some months for the MTX effect to appear so reducing the pred at that rate from the start was a bit cavalier. She hadn't put you on tocilizumab where you MIGHT manage that speed of reduction. Though even that isn't certain.
Are you still diabetic? Have you cut carbs drastically, especially processed ones and added sugar? Doing that, even at 60mg pred, can prevent the development of steroid-induced diabetes as a few on the forum will testify.
You have to emphasise the total return of the PMR in all its glory - and if she won't listen, you need a second opinion.
Hello again PMR pro. Im still recorded as diabetic but my blood sugars are now normal without any treatment so I guess that means Im in remission ?Thankyou for your advice I will write down all my symptoms as I dont trust myself to remember when Im there.
The trouble is they ask me to stand up to test me when I have only been sitting for a few minutes, she should see me trying to get out of bed or off the sofa after an hour or so then she would know how disabling it is.
I may even cry lol. Seriously though I will tell her Im toying with the idea of sourcing pred from the internet something that as a health care professional myself I would not advise but Im desperate. I have already put off starting my new job because I wont be able to manage. I cant even get out of the car without looking like an octopus !
Its good to see you are still around and giving great advice.
Dont think it would be a viable option PMR pro. Its a part time job and the service have lost the contract from October. The job thing has been a bit of a nightmare. I was offered a job in October but ocy health wanted proof of my vaccinations. Since computers were not invented when I was a child I have had to have MMR Dip Tetnus etc all over again which takes time and half way through the course I find out I may not have a job past October. Honestly if I was in a marching band I would be the one with a piano.
I assume you have stumbled across another doctor who thinks that Methotrexate can replace pred. They are WRONG. I would make a fuss now. Do you have to see a rheumy, 75% of people with PMR just rely on their GP?
You're entitled to a second opinion though so if you get no joy at your appt (after crying 😏). Then I would write a letter to your gp requesting one. It's always a lot harder for them to ignore letters. What a ridiculous person\
P to refuse you pred when it clearly works. But as PMRpro says, missing the meds to show them might work as well. I hate the fact that we are in their hands to get what we need and the power they hold. Good luck
Hi Travs. I feel your pain , literally 🤣 I tapered to 3.5 four years ago ( had been up to 40 with GCA) and Rheumatologist instructed me to stop Pred. which caused a massive flare . I’ve got down to 7mgs last year and rheumatologist gave me MTX I made myself reduce by 1mg to show willing Took 3months orally and felt pretty rubbish ,nurse suggested 3 months self injection which I did with no beneficial effect that I can see plus really swollen painful bumpy hands and feet quickly developed and increasing feeling of exhausted awfulness . GP have said they can’t deal with it and nothing heard from Rheumatologist for over a year so today I have an appointment to see a Rheumatologist up country recommended by the Forum Mods. hopefully for some plain speaking into what’s going on and insight into what if anything is possible . (I’m one of those who was told 18 months and it will be gone 8 years ago ) I’m self employed so can avoid early starts thank heavens . Hope very much you manage to speak to someone knowledgeable who understands that although Pred might be damaging , so is Predless Painful Paralysis 🙈🙈🙈best of luck 🌈
Hi K-mac thank you for your reply.You are right its miserable. Like many here I found that Rheumatology was the first service to stop during the pandemic and like you I found no silver lining when it stated up again.
I hope your appointment goes well today please come back and tell us all how you got on, I have my fingers crossed for you.
Thank you sooo much 🌈it’s a real downer when your default is totally up and at it 🤣 on my way now to Docs and fingers would be crossed if they hadn’t turned into lumpy 🥕🌈
Although I hear/read often the unprofessional behaviour of rheumatologists, it still angers me when a story like yours comes along!
First off, what an awful ordeal you’ve been through. To have the return of the horrid PMR symptoms sounds like a nightmare. It’s obvious that 5mg was your best/lowest/optimal dose to address your inflammation. Unchecked inflammation is dangerous and contribute to the onset of GCA.
You MUST advocate for your health. Your quality of life and career depend on it. Forget about “my rheumy wouldn’t let me go back on pred” which demonstrates how much power she has over your health. Physicians should work with us as a team, you are an expert in your body and symptoms, she is a scientist/specialist who is responsible to help you find the best way forward. Easy for her to demand you get off pred completely, when she’s not the one in agony! You are obviously flaring and need pred to mop up the excess inflammation. The methotrexate alone isn’t working. You’ve tried it her way and are paying the price. I’ve certainly cried pre-diagnosis after 5 months of progressively worse symptoms, and no one would blame you for letting it all out. Also 5mg is considered a low dose, less side effects.
I speak from experience dealing with my first rheumy who accused me of lying about putting up my pred dose “without her permission”…when indeed I flared due to following her quick taper and had resulting bloodwork before she instructed me to up my dose. Ridiculous! She later checked my file and called to apologize (for a range of unprofessional behaviour), too little too late. Only had 3 appointments with her, then overseen by wonderful, compassionate GP. Now I have a new rheumy who listens…so they are out there.
Wishing you some relief as you address your flare…and your rheumy. Hope you get the work challenges sorted as well. Keep us updated. We are here for you and “get it”.
Such a lovely reply thank you PMR Canada. Your words are just what I needed. My trouble is I hate confrontation and always put others before myself. Im going to pluck up the courage to fight my own corner for a change. Like you say I have tried it her way.
Good for you! The point is we shouldn’t have to “fight” with the medical professionals who oversee our care.
I too used to dread conflictual conversations but have come to learn that avoiding them means nothing changes, and engaging in them at least I feel better having a voice in the matter….and the outcomes are usually better overall.
If a conversation is hard, it’s probably the one worth having.
Sorry you are struggling so much it's dismal isn't it. I have been awake on and of all night with a cracking headache and shoulder pain. It's dismal isn't it. I think your rheumatologist is being unreasonable with you as you obviously need the pred. It sounds like she put you on a fierce reduction plan. I find 2.5 mg a month tough going. I have luckily been squeezed in to see my rheumatologist tomorrow. I think he will suggest l take methotrexate. Which l am not keen on. I would rather he let me go a very slow reduction plan.
Dont be afraid of the Methotrexate KASHMIRI1 ( are you a Led Zep fan ?). I have not had any problems with it save taking a double dose by accident one week and ending up at A+E. I now have a plan in place to make that impossible to do again. Sometimes I get 10 mins of nausea the day after taking MTX but it has halved the dose of Pred I can manage on so a partial success. Good luck. Im worried about your headache by the way, no wonder you got a quick appt.
Hi Travs. I'm on that journey. I'm in New Zealand. I'm currently on 15mg Prednisone and 15mg Methotrexate. My Rhuemy has me dropping once a month unless I feel amazing and feel I can manage a drop earlier. I've been on Prednisone for four years. Started on 40mg and have returned there twice. One of those times being July last year. So far so good on the reduction. Started off dropping weekly until I hit 20mg and slowed to 1mg monthly. Now I'm at 15mg. I've dropped a couple of days earlier than the month on a couple of occasions and I'm thinking of doing it again this month as I'm feeling good and my bloods are good. I started the Methotrexate in early October with no issues. My big problems normally happens around 10mg so my fingers are crossed. I do feel I'm in a better place. My advice would be to plead to go back on the prednisone, only taking the amount that gets rid of the pain and then go REALLY SLOW from there. Even if it means dropping 1/4 mg every two months or more. Hopefully this way you'll get your life back and get off it altogether in the end. Good luck!!
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