Can I ask a question - beyond frustrated/disappointed with all this - as are most people at some stage I know - but last April/May I was alternating 5mg and 2.5 mg - I asked to be left on it a bit longer as my rheumy wanted me to go to 2.5 but I was visiting my family in Canada and I didn't want to upset the applecart. Now I was able to have this holiday and walk around the city quite well (for me!). Since then not to repeat myself too much if I can help it - I was taken off the pred by the Rheumy (disaster) and put back on it by GP as I was so bad with pain and fatigue. My question is - I'm no better off really than I was a year ago - I'm on 2.5 now and cannot seem to feel any way human - the fatigue is appalling - including horrendous feet and leg pain. I'm panicking becaus as I said before the GP now wants me tapering this down in the next month or two at the very most and off it. (she thinks I'm only on 2mg or 1 mg for the last few months). I feel like hell - when I increased recently to 5/4mg for pain I felt much more human but that only compounds how little I've moved on in the last year - well no better really! I feel in limbo land trying to do all this by myself and knowing I've just used my last presctiption for pred before I go back to the GP. (this is for PMR - diagnosed April 2016). Sorry to be longwinded but I just don't know which way to turn. I'm in work and I can barely speak I feel so low. Should I feel this bad at this stage?? I was doing ok on 2.5 last year til the rheumy took me off completely - I haven't gotten back on track since. 2.5mg just isn't working for me never mind any lower. I feel like a balloon that someone let the air out of. All help as usual is much appreciated.
Help! : Can I ask a question - beyond frustrated... - PMRGCAuk
Help!
Oh dear power walk, I am so sorry to hear what you are having to put up with. It sounds like you believe that you SHOULD be getting better and needing less pred. The fact is that the PMR will stay for as long as it does and at the intensity that it does. I have had PMR for nearly 6 years now and have not managed on less than 8.5 mgs, usually higher than that. My previous rheumys made me feel that it was my fault somehow that I wasn’t on lower numbers. It absolutely isn’t our fault! What we need to do is to accept that we have very little control over what the PMR does. All we can do is make sure we take enough pred to make it bearable. You are clearly not on enough for your level of PMR and neither the doctors nor ourselves can make it go away by willpower!
Do remember that an average phase of PMR is now understood to be 6 years, so that is what you can expect. Doctors often don’t know this and make our journey so much worse when we are fighting the inevitable.
I don’t really understand the alternating dose as I think the body needs a consistent amount of pred everyday, otherwise it can get confused!
Please do consider your need to up your dose and if neither gp nor Rheumy agree, find new doctors that are better informed about what happens when we have PMR.
Take care x
thank you - I do agree with you - when I take the pred down as instructed - even the real bad nightsweats come back. And thats not good as its one of the really bad things I had before I was diagnosed. The Rheumy I was with - did an alternating dosage each time of say 5mg for a certain number of weeks - then 5 alternating 2.5 - then 2.5 and then told me to stop. She was stopping me at just over a year on pred - I couldn't even function and she sent me off and told me to "move my arms". I just sat there thinking - I am NEVER coming back to you. She did say to go back to her if my blood markers raised again!! And can I tell you - this is a private consultant so I had the pleasure of paynig her a small fortune for this. (Sorry I know some of the people here have heard my story before!). So it was then the GP put me on the low dose - thats why I'm in a panic as she wants me off it soon. I mean its not two years even since I started the pred - and I begged not to be put on it - not like anyone wants to be on this medication. Thoughts of another session tryng to get the GP to understand!!!!!
Ah, Powerwalk, this is the story of so many of us. I had PMR for over 9 years, now have Adrenal Insufficiency and am on 7.5 mg a day. Nothing else for it but to continue taking the Pred. At least I have more energy and no pain. I hope you find a happy balance that is right for you.
It may be time to get a referral to a new rheumatologist! You need more prednisone to clean out the inflammation and then a decent tapering schedule. Maybe 1mg at a time. Can you bring in some of the articles from here? Or send them ahead of time in hopes the GP will read them before seeing you. Shopping for a new doctor is hard but sometimes needs to be done. Feel better
Can I make a suggestion? Your top post is so honest, it screams of your pain both emotional and physical. Print it off and hand it to your GP, Your GP thinks you're coping on a lower dose, and is unable to help you without the honest situation being explained to them. Don't wait until you need your prescription, you will just be fretting for the next few weeks, attack now, get yourself signed off work (how can you possibly work in this state???) and try and get your GP on side, take a friend with you, and don't hold back on your frustrations and fears.
thats a good idea to take that with me - I never thought of that. Thank you. What state would we be in without this site! Its scary to even contemplate sometimes! To have people who know wht you're talking about.
We get embroiled in our depressions/fears/difficulties and can't see the wood for the trees. Been there done that! Sometimes it needs plain talking, someone else to clear a little of the undergrowth and show a path. Logic says to me that a female (GP) who hears the truth can only be empathetic and hear your cry for help. I sincerely hope I am correct, and that with her help you can take a step in the right direction, then other things can fall into place. I wish you well, and hope we get an updated post full of hope.
It is unbelievable that drs can leave you in such limbo still. It's a great ideas to print your post off and hand to the Dr. I was dx in June 2016 as we have shared before. I am still on 9 to 10mg and rheumy said to taper as slow as I need to. It is obvious to you and us that you seem to need a good dosage to clear inflammation up and slowly taper based on symptoms and not on drs unrealistic ideas. Good luck. I hope you get support you need from Dr ASAP🌻🌻
Thank you so much.
That is all so clear - take it to your GP. 5 mgs is a dose that is relatively harmless in terms of side effects and long term damage. You could take PMRPro’s heartening link that shows in a study that Pred at low doses is not harmful, as once was supposed. You clearly need a higher dose. Some Rheumatologists advocate staying on 5 mgs for a year to allow everything to settle. None of this is your fault, you are being mismanaged.
Yes - thank you for this. I will do that. Many thanks.
PMRPro will maybe reiterate the dangers of yo-yoing on the prednisone. I have a impression of my last 4 years of this PMR, but when I look at my notes I see that my notes describe what really happened!....
tapering too soon, messing with my hrt hormones, crazy activity and unavaoidable stress have wreaked havoc with this disease! I guess if you found a dose of medication that relieved the pain, ate right, got a good night’s sleep, avoided trauma, and went for a nice walk before bed, We would see better results. Ha!!! 5m is a low dose....life is short enough😊
god yes - certainly the last few months have been up and down up and down. Nothing working when coming down. When I'm on the 4/5 mg - I think yes this is ok - after that its all dwonhill once I come down again. You can actually feel it all going to pot by the day. My arms are getting all stiff and sore too. Many thanks for your reply.
You are simply trying to manage on a dose that is far too low for the underlying activity of the cause of YOUR PMR.
Top Mayo PMR experts have established (at least) that PMR lasts on average more like 6 years, not 2.
medpagetoday.com/rheumatolo...
rheumnow.com/video/dr-kathr...
And that PMR doses of pred are NOT associated with long term problems (other than cataracts).
I shudder when I hear of doctors trying to get patients lower by alternating doses - alternating doses to achieve a change of 0.5mg is acceptable. Alternating doses 2.5mg different when you are at the 5mg level is definitely not.
yes - withhindsight I wish I'd known all this all along with that Rheumy was doing that tapering - then finishing completely at 2.5mg. So in her world she had tried to get me finished within a year on pred. Its negligent really. Anyway its now I need to sort out - which hopefully I will be able to properly. Thank you so much.
Where are you?
Ireland, Dublin
Is there another option as a rheumy?
well if my GP won't deal with it til I see another consultant - then I think yes there is a consultant thats meant to be good - so if I need to go down that route again - I would ask for a referral to him - certainly not back to the one I was already with. (though by coincidence they are in the same hospital!!).
Does the Irish system have multiple-handed GP practices? Often a different one sees things rather more patient-orientatedly.
It varies - this one has another but very new GP started recently - otherwise its always been just the same GP. I've to get the results of my bone scan next week - so that would be a good time to down and get things on a more even keel. (Hopefully the bone scan will be ok!!!).
Hello powerwalk, so sorry to read and share your pain and frustration.
It might just be useful to approach your 'very new GP' If he/she is newly trained they could already be more up to date on PMR and happy to research further. If new to practice he/she is likely to be trying to create their own niche of expertise. Either way this could be the opportunity to develop a supportive ally.
Be honest, ask for help, and share your experience of PMR with them. Please give them a copy of your post (brilliant idea poopadoop,) and add to it anything provoked by the subsequent discussion which you feel relevent. It will have taken much time and effort to write down how you feel, so put it to good use.
Be optomistic, most doctors do care, and not many humans can resist a cry for help.
My sister has had PMR for 12 years, with a fluctuating amount of pred the entire time and never below 2mgs. Her Rheumy is in London and they have regular telephone chats. Her blood results never indicate pain, but the Rheumy and sis go with how her body is feeling. As I taper downside now, with the help and advice from this site, I keep a daily journal. I tapered the Dr's way from 30-25, 25-20 (the last time painfully) and so now am tapering down the Dorset lady way from 20-15 (keeping Dr informed and agreeable to this slower journey). I am also cutting and pasting relevant documents from PMR Pro into the journal to refer to when next I talk to the Doctor. I don't discuss too much with my sister, preferring the support from here instead, as it is not in any way competitive! Hope this is helpful. I'm fairly new to all this but boy, am I learning a lot. Knowledge is Power. X
I am sorry you are in so much pain,l think that you have been lowering the preds too much,l mg at a time would be better ,and if you are much better on 4mgs then it would be best to stay on that for a while as it does take a long time to manage PMR,l am stuck on3mgs,every time l try to go down to 2mgs l feel that l would soon be in as much pain as when the PMR first started,hope things improve for you soon xx
I know and just a small amunt makes such a big difference. I put them up at the weekend - I literally couldn't function on Saturday with pain. So a visit to the GP to try get evrything sorted is a must - no way I'm going to b e able to do what she thinks I'm going to be able to do. Thank you.
Hi Powerwalk, sorry to hear you are having such a difficult time. I am in Dublin too, only diagnosed last December. I feel lucky that by sheer chance my health insurance would only cover me (well 50% of the cost) for Sports Surgery Clinic so I am seeing the Rheumy there and he is great. Early days, obviously, but coming back to him for the second appt following various scans, MRI, extra blood tests etc I had prepared a list of ten questions. When he went through my results and proposed treatment he had already answered eight of them. He knew what I would be worried about and he also listened and responded to my last two (admittedly rather trivial - he had covered everything important!) questions.
I hope you get the treatment you need if not maybe ask to see my consultant. Good luck.
Ooooh - that sounds good. I'm sure someone else in the past has said they found the Sports Surgery Clinic good. And strangely - the Rod Hughes we keep going on about does sport medicine! The best orthopods I have met here also have a strong interest in sport medicine.
thank you - who is the guy you go to?
Where in Dublin is that rheu
She said at The Sports Surgery Clinic. This the only rheumy they list
sportssurgeryclinic.com/con...
They also have pain management specialists - and I found the person I saw here in the pain clinic very helpful.
Hi Powerwalk I feel for you it’s a horribly debilitating disease. I am 14 months down the line and coming out the other end so to speak but it’s a day by day process. Two steps forward and one back! I don’t want to promote a specific product because it may not work for everybody but for the last three months I have taken a daily tablet with 6 natural herbs that has been scientifically proved to reduce Oxidative Stress this has been the turn around for me.
Oxidative Stress in the body causes inflammation and pain.
Please do a little research it is the root of many diseases and it is being recognised more and more.
A good website is Pubmed where they publish all papers on meds and diseases.
I also took some very good advice from a member on this site and started to exercise daily to help with fatigue and it has transformed me mentally and physically. My natural desire was to crawl into bed but I started swimming daily and have loved it!
I wish you well powerwalk sending good vibes to you x
Hi powerwalk
I too like you feel exactly the same I was diagnosed in Jan 2017.
I was on 15mg pred reducing very quickly too quick in fact to omg then pain came back so put up to 15mg again but due to to some other issues concerns over Gca my doc has put me on 30mg pred till I see specialists like you still in a job of work and find the fatigue very difficult to deal with.
Thoughts go out to you I'm age 58 and male
Jura1959
I would go up to a dose that allows you to live a life where your not hurting so badly and getting depressed...what the heck...and I tell ya what...I haven't seen a "rheumy" yet and from reading on this forum I'm in no hurry to see one...specialists are often "full of themselves"...all I need is for one to talk down to me I'll show them some "'roid rage"..haha..dont laugh..
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