I was diagnosed with PMR in March 2016, having felt unwell for some months. My GP’s diagnosis was confirmed by my Rheumatologist. I was started on 20 mgs of Prednisalone and after 6 weeks, I started to taper down gradually, using advice from this forum. I pretty much managed my own condition apart from tests like an MRI scan, 2 Dexa Scans, X Rays, thorough eye examinations and numerous blood tests. I felt like I was managing well until I got to 7 mgs. I got quickly symptomatic when I tried to reduce below this. After several months I managed to get to 5.5 mgs after much stopping and starting. There is breakthrough pain and stiffness, tolerable though. Enter the doctors. My Rheumatologist said at my latest appointment that most of her patients are off Pred between one and two years. She is urging me to take a steroid sparer, Methotrexate . I have no serious side effects such as osteoporosis. I have gained weight but no type 2 Diabetes. I do however have mild Adrenal deficiency and have confidence that the function will gradually return to normal ( following a Synacthen Test, that I requested, because of swoony fatigue).
I saw an Endocrinologist today because of this. A charming doctor ( really). He thinks the PMR has gone and what I experience when I taper is withdrawal effects from long term steroid use. He says that these withdrawal effects can go on for 8 months. He wants me to stop Prednisalone immediately and go on to 30 mgs of Hydrocortisone taken in 3 daily doses. He is confident that my Adrenal function will be fine, as I have a good baseline figure and it rose to just under low normal. He says that Hydrocortisone has fewer side effects and is weaker than Pred. The side effects sound just as bad and will it help the pain and stiffness? The plan is to taper off the Hydrocortisone quite quickly over the next few months.
I feel very stuck. As soon as I left his surgery I felt grief for all the work I put in to taper down to 5.5 mgs of Pred. I feel frightened that the Hydrocortisone will bring me pain and problems. I know I have arthritic pain - might that be helped?
Methotrexate or Hydrocortisone? when all I want to do is potter downwards with the devil I know Prednisalone. Sorry for the outpouring. Any experiences or advice please?
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SheffieldJane
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Goodness, in have no words of wisdom but lots of commiseration. I would feel similarly aggrieved and frightened for the future, especially as you have been doing so well. I hope you find a way forward. X
Not really - sorry, no experience with either, but just to say I'm thinking of you, and do hope that advice the Endocrinologist has given you is correct.
Sure others who have experience will come along, but in the meanwhile have a virtual hug- the best I can do!
Hello Jane. RE; Hydrocortisone...I can only hope it works for you. It was HELL for me, and I demanded to come off it, after 3 months and acting very weirdly. My Synacthen showed Addison's so I do hope it will be a 'smooth ride' for you. Is it ever? x
It is also a corticosteroid so has some anti-PMR effect and as to whether it has fewer side effects - you have to try. As with pred, everyone is different.
That was Sarah I assume? I'm surprised at her to be honest!
I'm fine - I'm needing extra pred to manage the effects of atrial fibrillation which to be honest are far more scary than PMR!!! The flare is a combination of concern about the B-word and how it may affect us - no-one has any idea at all - and OH being in hospital again. I went to the Health and Social Insurance office today - and they are totally convinced it won't happen or that an agreement will be approved! However, now I do know that all I have to do to pay the voluntary contributions is go and find out how much I have to pay (income related so they find it off the tax website, Italy may be a bit doo-lally but they do have joined up thinking here), go to the Post Office and pay it and then take the receipt to the Health Insurance people who will put me on the computer. Sounds easy enough - and takes a day or so.
OH has probably had pneumonia again - he did take antibiotics but they didn't clear the oedema that developed. So today he asked should he up the diuretics when he has a chest infection - answer affirmative! And with a bit of luck we might get him the steroids we think would be a good idea too - hospital uses them so why can't he prophylactically. A week in hospital every time this happens is a bit of a pain...
I am not surprised that you are having a health wobble. Any one of those things is off the scale. I hope you and your husband feel significantly better soon! Good for Italy.
Gosh PMRPro I'm so sorry to hear about the stressors in your life right now. Fingers crossed the B issue will not impact your health care. All finger and toes crossed that you and hubby are both feeling back to your old selves soonest. Not that any of us are "OLD".
Sending you my best wishes.. I just heard on the news today that there is a possibility of another referendum on B..maybr I'm being naive as always but it sounded hopeful to me.🙏🙏
Other than being knackered - 2x traipsing to the hospital every day, 3x at weekends (he's bored and lonely!), and no time to do anything else I'm fine! Since this is the third episode in 9 months I'm getting the hang of it now. And this is relatively minor - they seem to have sorted out the lung oedema and we're hoping they will come up with a treatment plan that will prevent it getting to the stage of needing admission. If not, we will tell the GP what we all (daughters included who have personal experience either as a patient or as a nurse in the chest medicine realm) think is a good way forward. The last chest infection the paramedic daughter had resolved without antibiotics JUST by a course of steroids! Management in the UK would probably be different - a preventative drug for the bronchiectasis seems to reduce the incidence of infections a LOT.
It is all just the late consequences of the cancer treatment 26 years ago - we can't complain, he shouldn't be here at all!!!
But it just goes to shows it doesn't matter how well you look after yourself , and you definitely do , if the PMR is still lurking in there even the best of us can get a flare.
And it's not surprising with the physical AF issues and the unavoidable extra stress and activity of dealing with hospital trips and sick husbands.
That's why it is so important to have the right drugs for when you need them.
Send good wishes from a woman he's never met and never heard of to your OH for a speedy recovery.
Hope he and you are out and about in cafe society and eating ice cream in the sun again soon , Take care , Bee xx
He's had more icecream this weekend than for yonks! The superb ice cream shop in town has moved to right next to the hospital!! Not in the sun though ...
Switching to HC you mean? It has a much shorter halflife - which is why you take it more than once a day - and that means your body has periods with far less corticosteroid than with the pred. That also mimics the natural production of cortisol and is more likely to trigger the return of adrenal function. It is a recommended approach once the patient is down to 5mg pred.
I did a lot of googling before my ACTH stimulation test and I ran across many articles that said what PMRPro wrote.....that hydrocortisone can sometimes jog the adrenals to get back into production.
I would think that if you are worse that you could switch back to your prednisone and probably not lose much as far as dose. It may be dealing with different side effects rather than having to increase the pred dose.
Perhaps have a supply of prednisone, just in case you need to switch back. Keeps you in the drivers seat, rather than having to beg the doctor for a prescription!
I am coming round to that thought and asking if I can wait until I am back from Australia . Thank you. I appreciate your thoughts a lot. Were your Adrenals ok?
Luckily my adrenals were ok! The specialist wouldn’t do the test until I reduced to 2 mg of prednisone, which seems a lower requirement than most other postings. I got the test in late October.
I’m down to 1 mg now.....and still having a lot of trouble with fatigue 😡
Not sure if this is relevant, but when I went completely off the prednisone and the Actemra, the fatigue got better, although there was an overlap of new, unrelated symptoms, that fatigue I suffered when I was on pred has definite gone.
So maybe after you get to zero, your fatigue will lift, too. 🤞🍀
I think fatigue is worse than PMR pain or most any other pain. At least for pain there are meds and natural remedies, for fatigue there is absolutely nothing.
Pred is supposed to make you hyper, not fatigued, so it is the withdrawal that causes the fatigue and since one is already fatigued by the PMR, it all blends in together and you don't know what's what!
Just noticed this. Must mention that pred NEVER made me hyper - just ever more fatigued. (Started on 40mg in Nov 2016).) Total wipeout for most of 2017. Gradual, inconsistent improvement since (now on 6.5mg). Not holding my breath!
I have seen other comments that say the same. For some it took up to a year for the fatigue to leave.
I’m pretty disappointed that my fatigue hasn’t improved at my very low dose of 1 mg, and I’m worried that it won’t ever go away. I’m in my 7th year of PMR and have missed out on a lot of years. OK, enough whining from me! Could be way worse!
It's hard to be patient after waiting 7 years for the fatigue to go but it will. They say exercising regularly helps fatigue but when you have fatigue, you can't exercise.. There are so many factors to this disease! Lucky you, though, you're almost there..
I really feel for you. I was diagnosed about the same time as you and have only reduced to 9mg. Although I do not have the complications you have, I have been dreading my Dr suggesting something new to speed things up, he made noises last visit!
I wish you all the best, I hope someone comes along with some experience to help you and put your mind to rest.
This forum never fails to surprise me at what all these different doctor`s present to us....I can understand how you must be feeling....I suppose nothing ventured nothing gained...I do hope it works for you....but if you are going abroad soon, can you not delay until you return, at least you know where your are at right now....good luck....
I have no words of wisdom but just want to say I am thinking of you
We work so hard to listen to our bodies and reduce Peds ,without dropping too low.
I had to go from 7 up to 15 in Dec last year, and just reduced down to 12 today Diagnosed in Sept 2015 .
All I can say is dont be pressured by anyone to do something you dont want to do ,we all need quality of life with this illness .Its bad enough having PMR/GCA as it is .
It’s the implied threat if you don’t follow doctor’s orders that scares me. I wish they would sell their decisions to us, transparent thinking and all that.
I just replied to myself. It was for you Rose, thanks for your input as ever.
I meant to add with my post to you....is it the adrenal gland problem why they want you to change steroids?....because now you are down to 5.5 which is very good why can't they wait longer for them to respond?
PMRPro has explained about the shorter half life of HC and the chemical composition being more like our natural Cortisol, all making it more likely to get the Adrenal glands going again. This was the missing part of the jigsaw. To my shame I vaguely remember the Endo doing a wavy line drawing, whilst my mind was going aaaaaaargh! It is not natural for us to have steroid in our body at the same level for 12 hours. HC will do the ups and downs.
My Mum was on long term Prednisone (back in the day) a long term Chronic Asthmatic; when she eventually weaned off it & she’d been on 60mg per day, she had an Addisons Crisis & Collapse, she was very ill but they gave her 100mg Hydrocortisone & it was like a Miracle, she then started on Hydrocortisone daily x 3 per day, l can’t remember the exact doses now but she had more in a morning than she did at Lunch & Teatime.
She did very well on it once we sorted the lunchtime dose out as she sometimes would forget it!
You need to be more vigilant about taking it, use the alarm on your phone & definitely a Medic Alert Bracelet.
Interestingly, if she had a Chest Infection they always gave her Pred so she didn’t confuse it with the Hydrocortisone or mix up her doses.
They are absolutely fine, if you go to them & explain, when l got off the Ship, we’d already been cleared through Customs on board but the landing card asked ‘Are you carrying Steroids? if so make yourself known’ So l looked for the most handsome guy & went over to see him with my Blue Card, Consultant’s Letter & he said ‘No Worries, it’s not that type of Steroid we’re interested in’
Thanks for explaining....well I hope of it works very well for you.....if you decide to change s teroids........and might be tempted to go for it myself!😏
Hi Jane, to my very untrained eye, you've had pmr for three and a half years. You're down to a hard earned 5.5mg and are comfortable there. The endocrinologist thinks pmr has gone, but you clearly do not. He wants you to go from 5.5mg pred to 30mg of Hydrocortisone with horrible side effects. Seems a no brainer to me to stay where you are.
Oh dear. I feel for you Sheffieldjane. I have a rheumatologist with the same philosophy as yours and I've refused methotrexate to-date. I'm also suspicious of adrenal insufficiency due to a lower than normal absorption of prednisone. Unfortunately, I'm not low enough on prednisone to have a Synacthen test.
As others have said I hope the Endo is right. Maybe you'll do all right on the hydrocortisone. You can always switch back to prednisone if things go south on you. As for the methotrexate, personally, I wouldn't add two new medications at the same time. How would you know what side effects are coming from where.
Hi Jane, I can only imagine your dilemma. Don't worry about the outpouring - that's what we're here for ;-). Sorry I can't offer any advice, but here goes from experience:
My Rheumy acknowledged that, for some PMR Patients, the disease course can be much longer than 2 years. When I was at a similar sticking point to you (endlessly struggling to reduce), he advised against steroid sparers due to their potentially equally bad side effects - and, in one case, the cancer risk. So, his advice was to stick with the Preds and just be patient. (My very nice Rheumy studied under Prof Dasgupta, is a specialist in PMR, and well respected - send me a PM if you want his details for a second opinion?)
Either way, keep your chin up and I'm sure you'll get tons of advice and thoughts / experiences from others of Us Lot here.
Getting a bit more advice from someone with a specialism in PMR , or from someone via the PMR/ GCA Society with experience of these drug changes seems like a sensible idea to me.
It's only with information that you can be confident in that you can make the decisions on a health plan.
Otherwise it feels like jumping into the unknown , not something I would want to do if I was SJ after she has come so far and done so well.
Perhaps you could just send her the address via PM yourself anyway if you have it.
Dear Jane, PMRpro explained how hydrocortisone (HC) works. I'll try to tell you about my idiosyncratic experience, in case it is of use to you. Last July I was started on HC because I had been on prednisone (in the US) for 16 years for a slew of autoimmune conditions. I had adrenal withdrawl symptoms during attempts to reduce pred itself, hence the introduction of the more bioidentical HC. My dose was/is 30 mg HC to replace 7 mg pred--4-5 mg of HC=1 mg pred, more or less.
Just as I started HC in July, I also had all the classic symptoms of PMR, voila! This is where my story gets a little weird. My rheumatologist was the one to first suggest PMR as a dx. Then he got cold feet, because he was/is uncertain whether my symptoms and raised ESR and CRP are caused by one or another condition. Without boring you with those possibilities, I'll just say there is some logic to this worry, and he is a very kind and caring dr with excellent credentials. Both he and I have seen my PMR symptoms get worse, so he has done something unusual. He has added 1 to 2 mg of pred to my cocktail of 30 mg HC; the pred+ has helped my seeming PMR. This may help you understand, as PMRpro has said, the interchangeability or at least the compatibility of the two forms of corticosteroid.
Now back to side effects. HC is much smoother, I am calmer, and it may well be easier to reduce. I have not had ankle swelling or any other bad symptom. The only issues for me are remembering to take it, and its inability to handle the inflammation of PMR or whatever else is raging. The latter issue is a big one, of course, and one that may be a big factor for you.
My advice to you would be either to try HC, because you can return to pred easily, or to try a very slow taper of pred. You can always PM me. Sorry to have been so long winded. All the best, JoA
You have my sympathy! It is so hard when doctors don't agree or can't make sense of their recommendations to us!
I am reading this and wondering what it will be like when/if I ever get down to those levels of Pred. ( always seem to have been on 11mgs over the last 6 years). A few years ago, one of our esteemed Rheumy's told me I would probably be on steroids for the rest of my life. He may have been right, but it hasn't been tested yet and it was unnecessarily upsetting for me. I didn't consult him again!
I am sure you will make the right decision for you , especially as you are getting good information here to help.
I don’t mean to be discouraging Suzy. My Adrenal glands might be struggling because they have also been stressed by Thyrotoxicosis. Everybody’s journey is unique to them. For instance you might be someone who absorbs less.
Oh i feel quite upset reading this. I thought you were pottering along. Your timeline is almost identical to mine. I am still on 4.5mg pred. Its going against what we've been learning on this forum about the 2 years off pred issue. I wish u luck with ur decision. I dont know enough about hydrcortisone. I hope it works out whatever you decide.
I have no wisdom or experience to draw on Jane so I don’t feel able to comment on all of this at all.Just wanted though to say just try to take your time making a decision. We know that 1/2 years for PMR is certainly not the norm as we see on here. We also know the possible side effects of methotrexate and how this is usually given at a much higher dose, often when PMR or GCA starts. We also have been given a good resume of why HC may work but also the assurance that if it doesn’t work you can resort back to Pred. So now you have relevant info you can take your time making an informed decision. Do feel for you though Jane we have enough tough decisions to make without added complications. Sending you virtual hug 😘❤️X
Can I just mention that Jane's rheumy suspects it may not be "just" PMR but that psoriatic arthritis may have come out to play. That's part of the thought behind the methotrexate I imagine.
Thank you for that- had forgotten about that. Wish though that they would explain why something is being suggested- it helps then to make a more informed decision. Thank you for filling in the blanks. Sorry to hear about your and hubby’s situation at the mo. Do hope there will be improvements soon. X
The 5.9 years is from a relatively new study - pre that there was, years ago, a quite small study that suggested it lasted 18 months to 2 years. And, I suspect, because doctors think patients can't cope with the idea of being ill for long, they take the low figure. I have a great suspicion that a lot of doctor lose sight of many patients - who either go home and suffer thinking that it is now being older that is causing their problems or (I hate to say it) a lot of patients are so elderly that death is the end point. There is also a bit of thought that it is getting worse in that PMR manifests younger and so is a bigger problem because we still expect to be able to live actively in our 60s and even 70s: think what our mothers and grandmothers were like at those ages. They expected to be stiff and in pain with rheumaticks.
I wonder when it was coined? I think my grandmother had it, she just called it rheumatism but was never diagnosed as she belonged to some religion that doesn't allow medical treatment.
GCA was written a couple of years later by Hutchinson but not described as a separate disorder until 1932 by Horten and his name is still used in some countries.
PMR was classified as a disease in its own right in 1966 - so really relatively recently. There was no treatment for either before the late 1940s when pred was discovered. It is said that in the early days of pred research they gave patients in wheelchairs large doses of pred and they stood up and walked - I think probably PMR patients. It was only much later that they realised the potential long term effects of high dose pred and that was when the fear of steroids began to develop.
Wow, so PMR was never considered a psychosomatic condition like Fibro and ME. Paradigms shift quickly in medicine but few doctors stay ahead of the game, seems like.
I saw a young doctor recently who was up in arms about my vitamin D level (70) and told me not to take ANY more vit D suppements, as if I were about to overdose on it! I wasaiming for 100😜
That's like "Hammer Time" but with added Brain Fog😂😂😂
Sorry for joking , I know you must be feeling really confused and fed up right now and I just hope a little light hearted moment may ease the strain on the brain a bit.
I am still stuck in " to Pred or not to Pred " on at the other end of the pain and symptoms path.
All Rheumys and other specialists seem to be going around in circles making a decision on what to give me , no one seems to be willing to make a decision or give some suggestion on what effects any changes of drugs might have.
The Doctors often seem as scared as we are to decide what to do with our weird and unique systems.
You have been given alot of great advice so far , and I would particularly take up Uncle MBs offer of an address for a specialist , whom you could email just for some more comprehensive advice or literature on what your options are and the possible outcomes, even if you don't have an actual appointment with them.
The PMR/ GCA society may also be able to point you to others with advice or literature on patients experiences with these drug changes to help you in a decision.
When you have more advice you could post again and chat it out here with everyone again.
Then you will feel confident to make a decision that suits you , not just your Doctors, hopefully after your trip to Australia so you can just enjoy that before taking the next step, that would be my advice , delay the new system until you return from your trip.
Then with information tell you doctors what you want to do with their help and support , be it try the new drugs or remain on just Pred , it is up to you .
Take care and I hope things clear up soon, hugs , Bee x
And when you make your decisions and your doctor's complain you can always use that other famous quote , " Frankly My Dear , I don't give a damn." 😋😁😁xxx
Dear SJ, so sorry to know that you are feeling so unwell and having to cope with decision making at this time. Your posts on this forum are always so kind and helpful. I have no advice re HC as I am still at 12 mg pred and reducing slowly. I am thinking of you and hoping for better days ahead. xoxo coda
What a dilemma Sheffieldjane. I'm too newby to be of help but am hoping that the wise advice from our oracles will help. Very good luck with your decision. If our collective good vibes and best wishes could help, you should be feeling their warmth. 🌷🌹
Reactive arthritis is generally regarded as a short-term form of arthritis which developed in response to, usually, an infection. Once the patient has recovered from the infection (or whatever), the joint pain and inflammation also recedes and disappears. The pred doesn't fix that problem either except to help reduce the inflammation at the time, the difference is that there is no longer an on-going cause underlying and renewing it as there is in PMR or other forms of arthritis,
Your post has at least educated me about hydrocortisone which I had been wondering about myself yesterday. Thanks for your input.
We’re on a similar timeline but you have tapered more successfully than me. We both have ‘other’ things going on apparently but it’s horribly hard to know what to do. The advice sounds eminently sensible from your Endo but they don’t appreciate the terror we feel contemplating a flare! I think it’s the lack of understanding of PMR means nobody really knows exactly what’s best so we all just muddle through. Most of us on here are here because we’re not ‘typical’ whatever that it and want to understand how best to deal with this. Hopefully we all learn enough to challenge our doctors and at least have an informed discussion about our treatment. My new rheumy at least uses the language ‘so what are we going to do now, or what do you think’ so I believe I’m participating 😁
Mind you I’ve still come away with my new drug cocktail mainly because she sold it to me as a very logical way forward.
HC maybe that for you and may work. I look forward to hearing your decision but I agree that you enjoy Oz first without adding more stress!
Jane
Do you have a GP in your Practice you could go & chat with about all of this? Make a double appointment so you have sufficient time, also when do you see your Rheumatologist again? xx
You are right Angela. I need to move fast or my prescription for Pred will stop. I know the Endocrinologist is sending a detailed letter to my Rheumatologist and my GP. I want to delay this change in my treatment until I return from Oz at the end of April. I expect I would have to stick at 5 mgs Pred at the very least.
Does anyone else have difficulty in explaining their PMR journey in a coherent, chronological way? I do.
It’s not easy explaining...... eventually l wrote a timeline but kept editing it as l realised l’d missed things out, you could try that & keep a simplified version to hand to Doctors.
Why is Endo convinced PMR has gone? 🔮
When Dr Lim (RIP) discussed Adrenal Difficulties she said l might be on a combination of both Pred & Hydrocortisone as my PMR was/is still active but l was at 5mg with Methotrexate when l had the ‘Episode’ as l now refer to it when l was so ill after the week of our Ruby Wedding Party. But you may remember my experience with the Endocrinologist!.......
I’m back up at 10mg again as obviously the Methotrexate was helping! I’m not going to start trying to reduce until we get back from France.
When do you leave for Oz? Might be worth seeing GP to make sure you have enough Pred, your Hydrocortisone Kit is up to date & a letter of explanation wouldn’t go amiss.
I always pack all mine in a Lock’n’Lock with my repeat & letters etc, it has NEVER been queried!
That’s all sound advice. When I think of all the decisions I took at work, it’s like another person to me.
This has helped me to reach a decision. The Endocrinologist, who is very nice, clever and thorough based his opinion on what I said. I really don’t think PMR is as active, it’s just intuition really, I have some pain, stiffness and fatigue, but I don’t think I’m ill. Then of course my Rheumatologist said I could have Psoriatic Arthritis, right at the end of the consultation. No specific examination or anything.
It all makes my head spin. It’s like I’ve looked down and lost the plot.
I find it very hard to articulate the journey to a medical person. We have brain fog, pred head and other conditions that sometimes come into play. And so much trial and error. I sometimes think how can a sick person remember and answers all these questions. I feel quite brain impaired. I wish you the best dear Jane and agree don't change a thing till after your trip. I hit 3 years this February and am at 7.5 so I think you are doing wonderfully. I seldom have fatigue. Just fits and starts. After nausea yesterday I am better today so something is cranking up. I know my PMR is still active because if I don't split my dose I feel sick for 4 hours till my meds finally kick in. ATB ❤️
Hi I know a little of how you feel,Its alright for people who haven't worked hard and,haven't had the pain, I wish I could help you more,keep at them to get it right for youx
We can all relate to this dilemma. I commend your self direction and self management. While im new to this condition, if ive learned anything over the past 6 weeks following these chats and familiarizing myself about pmr and prednisone, it has been about how to taper. Stopping cold just screams WRONG.
I would really get other some other doctor’s advice and continue to be your own advocate.
I hope you find the answer to this. I hate that you are having all this thrown at you. Wiser people will have some ideas.. all I have is love and support..and send lots of it.. Stay strong. Breathe! and keep us posted. ox
I’ll just add my experience when, in the same circumstances as you, the endocrinologist switched me from pred to hydrocortisone. I found I felt much more myself on hydrocortisone than on pred. I wished it had been my treatment drug from the beginning. It allowed me to finish tapering off corticosteroids completely in 5 more months. I hope you also have a good experience.
Good luck in making a decision and I'm sure it'll be the right one. Hope you have a lovely time in Oz. I was there again last October seeing family and felt better than I had for a while. Maybe wait till after your trip and see how you're feeling then. Good luck
I think I would feel exactly like you word for word.I’m sorry but I can’t offer any helpful advice but wanted you to know I completely understand your dilemma.Very good luck and of course I will follow your experience with interest and hope for you.
Don’t be sorry at all. You must be beside yourself but whatever you do don’t do anything you’re not sure about - and certainly not before your Oz trip. I would speak to your GP and tell him how you feel - I’m sure he’ll support your decision. I listen with interest as I may have been heading the same way except my Rheumy or GP don’t want me to have a synacthen test - currently hovering on 4mg.
Oh dear Jane, I really feel for you. Can't offer much on the hydrocortisone I'm afraid but I am a Methotrexate hater!! That's only because it didn't agree with me at all, felt ill, achey and more tired than usual!!! AND started losing my hair very quickly..that's when I called it a day!!
PMRpro says you can switch to the equivalent dose of hydrocortisone and vice versa so I might be persuaded to try that. Even better if you can cope until after your holiday, providing you feel ok to do that of course.
I'm on course for synacthen test as I'm almost down to 5.5mg..we'll see what the rheumy says in April. Good luck with it all, whatever you decide to do. x
I felt just like that on mtx too - felt worse than with untreated PMR! The rheumy didn't argue - so I suspect he'd met it before too but it is nice to have one's feeling affirmed!!!
Horrible drug!!! And yet I have a friend in Canada who has been on it for 25 years!!!! Sorry to hear you're having a rough time of it at the moment. I really hope OH improves soon and that you feel better. x
Thank you altywhite. This has been such a valuable thread for me and others too I hope. I phoned my Endocrinologist today, all prepared with my arguments to delay until after Australia ( I threw up on the plane at the beginning of this journey, I don’t want to at this end too).
He said “ok”. Deflated or what?
He did add that in one week I would have known if Hydrocortisone would work for me.
Thanks to everyone! 🍀
Especially PMRPro our fount of all knowledge! I’m glad you’ve got him home, with a plan. I wish you both well!
Do hope you have been given the right advise I got down to 6 then hadto go up to 20 and start again I can put up with the pain but worry about my eyes. I am down to 10 but cant seem toget beyond that take care xx
Thanks Thaiboxing! My Endocrinologist told me I could stay as I am until I return from Australia. Sorry that you’ve had to return to 20 mgs. Do you have GCA? Do you use a dead slow method of taper? I am fairly ok until doctors get involved with timetables.
Having just caught up with your back story, as it were, I feel just the same re. Using other drugs. Pred has been my friend/foe for 7/8 years & having got down to 2.5 I really don’t like the idea of methotrexate etc. I am pretty sure it’s taken so long due to stress over 5 years if trying to sell our family home with a beautiful garden Noone wanted to take on & land we didn’t want over developed, Also my 30 year old son had testicular cancer a couple of years ago. Now we have downsized and son is well & happy I try to be calm but old habits die hard!
Anyway ...... onwards & upwards. By the way I am also a Yorkshire lass & husband born in Sheffield. Been in Cornwall 30 years 🏄♂️
Thank you for bothering to look me up! We do seem to have things in common. I do sympathise with the trauma of giving up a home that you clearly care deeply about. Your son’s illness must have been such a worrying time for you, I am so glad that he is well and happy!! I can quite see that this would put his mum on “ high alert” that is difficult to come down from. All this is food and drink to PMR/GCA of course.You are living in arguably, one of the most beautiful parts of the world and it is time to start healing. If you are Yorkshire lass you will have some great resilient qualities. What are you going to do to signal to your self that the crisis is over? Mindfulness is a lovely way to change the way you greet stress and deal with pain. I did a course that really changed my relationship with my body. I did at least 3 meditation courses too. The trick is to remember that you have these tools and not to keep them locked in the toolbox ( me). 🦋
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