Not getting anywhere!
Posted , 13 users are following.
Hi everyone,
Well it’s been 2 1/2 years since first visiting my GP in screaming agony , he believed I had PMR and started me on predisolone as normal (40mg a day) which certainly did the trick.
Eventually got to see a Consultant Rheumatologist who said I had reactive arthritis and it would go after about 6 months.
I have been trying to drop the pred. But cannot get below 3mg, having frequent very painful flare ups and Am now on a manageable dose of 5mg but it’s is not pain free.
My appointments with my consultant are every 8 months and all he seems to do is mess with my meds’ which have no effect.
I am getting really hacked of on two fronts, the first is the diagnosis, I think PMR fits more with my condition, and secondly the apparent dithering by the consultant and the length of time between appointments.
Just wondered if anyone has had similar issues, it’s very hard to speak to a consultant outside your normal appointment so get nowhere.
Also unsure how long I can remain on pred.
thanks in anticipation,
Tony.
1 like, 32 replies
Rimmy tony92243
Posted
Hi Tony
In a word (or two I'd) 'change your service provider'. If we get an ineffective plumber, electrician or to 'scale up' - a dentist (for example) none of us would hesitate to find someone with better skills. This is your life after all and these are big gaps not to be receiving appropriate treatment. I have found my GP to be very helpful - I have informed myself as much as i can reading not only forum discussions but medical journals, recent research etc. I am however not saying this makes me an 'expert' - obviously not - but I do know when a diagnosis seems reasonably accurate and the treatment actually appears to be 'working' . I have found my GP to be very helpful in this regard - monitoring with all relevant blood tests etc and seeing me very regularly - any time I want really.
I really hope you have some luck when looking for alternative support and treatment if you decide to do that !
Best wishes
tony92243 Rimmy
Posted
I think my main problem is the length of time takes to get anything done. Originally I was told I had to wait 18 weeks to see a rheumy ! I was in so much pain I went private and was seen in a couple of days and given the DX so felt relief at the time, and also that it would go in 6 months , plus I got into the ‘system ‘ more quickly! I suspect I might need to put my hand in my pocket again if I’m going to get anywhere, but will go to my GP first to see if there is another avenue.
Tony
EileenH tony92243
Posted
Can you not change your rheumatologist? Obviously it isn't reactive arthritis - though it could be some other form of arthritis.
However - since you are in the UK (I assume, since you are on prednisolone), you don't actually need to be under a rheumatologist. PMR is generally managed by the GP although rheumatologists feel the patient should be seen at least once by a specialist to confirm the diagnosis (haha, but there you are) but they do often hand the ongoing care back to the GP if the GPs are happy about it. There is a worldwide shortage of rheumatologists - no doubt because of our rising ages and loads of elderly patients with rheumatological problems who are living so much longer! In NI for example, the waiting time to see a rheumy is 18 months!
As for how long you can remain on low doses of pred - as long as you need. As someone has mentioned, every day the body makes the equivalent of about 7.5mg of prednisolone of a corticosteroid called cortisol which is essential to life. When you are above this dose of pred your body doesn't make any more but uses the pred, by 5mg it is having to top up the dose to get the amount it needs. So most doctors stop worrying about the length of time patients are on pred at this level and there are many people who are on 5mg for life. I have been on prednisolone for over 8 years and have no side effects - weight gained and lost again, no diabetes, my skin is fine, no cataracts, BP is well managed but it was probably raised for another reason. I struggle to get below 5mg too, I'm best at 7mg. A recent study has found that the long term effects of being on pred are the same as a matched group of people who weren't on pred. If you go to this post
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
which has our "reading list" you will find a link to the study "Polymyalgia Rheumatica and Steroid Side Effects: New Findings" which was done by a top PMR expert from the Mayo Clinic who is concerned about doctors panicking about patients being on long term pred and trying to force them off it when they are not ready.
Only about a quarter of patients are off pred in 2 years or less and they are at a higher risk of relapse - the average for a good half of patients is 4 to 6 years. So you are not unusual in not being able to get off pred at this stage.
As Rimmy says - discuss with your GP about "changing your service provider" - and to be honest, to the GP makes most sense since they are able to see you "on demand" even if you have to wait a while for the appointment and are in a position to monitor things in terms of blood tests and checking BP and so on. You are never going to get an emergency appointment with this rheumy are you. It is even surprising when you see the same person every time in the NHS at present though that is sometimes a benefit ...
tony92243 EileenH
Posted
Thanks for all the info., it is reassuring to hear that my level of pred. shouldn’t cause any probs., I think what is coming through is to be more proactive re my treatment, you do put your trust in the system but for various reasons I don’t think it’s working for me.
So Im going to see my GP and start to charge of my treatment!
Many thanks
Tony
EileenH tony92243
Posted
If you and he are confident it is PMR - HE can manage you perfectly adequately while you either pay for a good rheumy (and private or not, they all vary in quality) or wait patiently to get a second opinion.
If you are in England you can choose who you are referred to if you are willing to travel at your own cost. That isn't the case in the rest of the UK. There are people I would recommend for doubtful dx's - but I don't know where you are.
lilian05079 tony92243
Posted
Hi tony92243
I do not know where in the world you are living..is it the UK?....i have been expedited to see my rheumy..he has brought my appointment forward by a month. This is not because my doctor sent him a letter to expedite my appointment but because i rang my rheumys secretary because of the dreadful pain in my shoulder caused by bursitis and ask her would it be possible for her to speak with my rheumy as i was in terrible pain and bring my appt., forward, she said she would tell him..Low and behold i've had a letter and i am seeing him next week instead of end of december..However, in the interim my doc had sent me to the hospital because of the pain and a rash that appeared on my shoulder he was afraid of septic bursitis which is dangerous, and i had a cortisone injection at the hospital and the pain is gone.. but i will keep my appt., with my rheumy anyway. The point i am trying to make is if you telephone your doc and ask for an expedite letter to be sent to your to bring your appt., forward or ring your rheumy secretary and explain your problem your rheumy may see you sooner..the rheumy's details can usually be found on the web.....give it a try you may be surprised..my very best wishes to you tony92243....
EileenH lilian05079
Posted
Lilian - may I explain that the system in the UK is nothing like the USA unless you are in the private system. This is a UK-based website, it was the first PMRGCA forum in the world, so a lot of contributors are in the UK. It is often very difficult to contact your rheumatology team directly as a patient except when you have an assigned rheumatology nurse and it is next to impossible to phone the hospital and expect to be put through to a consultant rheumatolgist. He would be unlikely to have your notes available anyway. I live in Italy - even I can't do that. I have to go via my GP who is the gatekeeper. In an emergency I can go to the local emergency department at the hospital - who can also contact the right specialist if necessary. But not necessarily the one I usually see.
Whether you think this is right or wrong - that is the way it is. But we don't end up with no medical cover because we are unemployed or faced with medical bills that would bankrupt us. So I suppose it is swings and roundabouts...
lilian05079 EileenH
Posted
Hi EileenH
This is why I queried what part of the world tony92243 was based....it's very daunting and exasperating when he has problems with his diagnosis and meds and can't get any answers for 8 months. I could not have spoken to my rheumatologist direct but we can speak to our consultants secretary who will pass on your query to the consultant or we can email and we will get a response...and docs will send expedite letters if it is necessary. We winge about the the NHS in UK...but reading what you stated in your post about health care in other countries, we are very fortunate really with health care in UK..this has always been my experience, but can't speak for everyone though....my best wishes to you EileenH...
tony92243 lilian05079
Posted
Great that you managed to expedite your appointment,
I think the GP is key to my issues here, time to rattle the tree and get things moving.
Tony
lilian05079 tony92243
Posted
Hi tony92243
That's the way, keep rattling until you get a response.....my very best wishes to you tony92243..i'm rattling that tree with you...
mimi1950 tony92243
Posted
I had the same problem as you, my rheumi is a good professional but not accessible.I can never see him less than every six months.
I've been diagnosed with PMR for over a year now ..quite a rocky journey.If it weren't for the experts that contribute on the two PMR/ GCA forums that I follow, I would probably still be bed bound like I was for months prior to DX. Everything I know about the Disease , I learned on the forums.You will find that no doctor knows better about the ins and outs of it than the contributors to the forums and they respond quickly. I feel totally protected. Prefer not to see my rheumi so often..it allows me to taper at my pace instead of stressing out about not sticking to the schedule the rheumi gave me.
tony92243 mimi1950
Posted
Yes this forum is such a valuable resource!, without it I would certainly feel alone, wondering if this was my lot in life. It’s great to know your not alone. The ‘goals’ that Rheumy’s set are always unrealistic and when they can’t be met makes you feel worse.
I tend not to worry so much after 2 1/2 years, I try and make progress at my own pace. But it is a medical problem and you do expect to get meaningful help from that direction, anyway am going to contact my GP who is good and try and move things forward.
Tony
Kdemers tony92243
Posted
tony92243 Kdemers
Posted
Yes sounds very similar to my situ. Feels a bit like I’ve been pushed to the margins a bit, I don’t think my Rheumy has much of a clue what to do with me, convinced he’s got my DX wrong which Im going to address soon .
Haven’t done any charts, never been asked to do one, but might do one if it helps.
Tony.
mimi1950 Kdemers
Posted