Why are you still taking steroids!

[Classicmichael]

I am so fed up with the medical professions ignorance that I have decided to go it alone.

In May 2013 I was diognosed with GCA by my GP after suffering headaches for months and ending up with severe pain in my temples and taking to my bed with a fever which soaked the sheets.

She was brilliant and after taking blood which came back with results the same day with an ESR of 44 I was told to take 60 mg of Prednisolone straight away.

The result several hours later was miraculous, the temple pain vanished and for the first time in months I had no headache or neck pains.

Ten days later I attended the ophthalmology dept at the hospital and the Doctor confirmed GCA.

A couple of months later I saw a senior consultant at the Rheumatology dept who examined me who also said that I had GCA.

Three months later I Iearned that the same senior consultant had left the dept and I had been passed on to a new consultant.

She decided to write to my Doctor to say that because my inflammatory markers were in the normal range my temple pains were down to referred neck pains and that in her apinion I could,nt possibly have GCA.

After six months on steroids I managed to get down to 20 mg and then the PMR kicked in with a vengeance .

I developed dreadful pains in my hips,back,legs and in particular my knees, and felt dreadful with terrible tiredness and sweats.

My GP said to me, you certainly have PMR and was very supportive but unfortunately retired shortly afterwards.

It has been all downhill from then on with a further appointment to attend at the Hospital with yet another inexperienced registra asking me if I can raise my arms above my head and after replying YES he gave me his diognosis without examination or leaving his chair. YOU DO NOT HAVE PMR.

I have had enough of this utter incompetence and when I received an appointment from the rheumatology I said that I did not wish to see this consultant and was told to get a Doctors referral if I wanted any further appointment as I was now considered DISCHARGED.

I am now on my third GP in almost as many months and this one wants to know why I am still on steroids after 18 months as my blood results are normal, what an idiot.

I am now so utterly fed up with the lot of them that I have decided to self medicate and to hell with them.

I saw proffesor Dasguptor in April and he was very supportive he confirmed my diognosis of GCA/PMR and was very thorough in his examination.

I cannot see him at present because recent heart surgery has taken priority but I have reached the decision that these chronic conditions are enough to cope with without having to deal with this arrogant indifference and ignorance needless to say that I have completely lost faith in the Hospital and so called Doctors so I will soldier on alone.

,

[PMRpro Ambassador]

Not quite clear what you mean - since you need the pred and that means prescriptions. If Dasgupta saw you and confirmed the dx can you not remain under his care for the PMR? Where are you (sorry, if you have said I can't remember? There may be another sensible rheumy within easy reach if Southend is too far for regular visits.

I really had thought things were improving. Apparently not. As for your current GP, print off this paper

rcpe.ac.uk/sites/default/fi...

and send it them with an xmas card. GCA is a minimum of 2 1/2 years according to them - that's without flares.

[Classicmichael in reply to PMRpro]

Hi PMRpro I am in Suffolk and although I am extremely grateful to the professor for his definitive diognosis, I was rather hoping that my day to day care would be more local as I do not feel up to the 120mile round trip to Southend Hospital due to recovering from surgery and facing more heart related problems in the new year.

I am not under any illusions regarding the limited help and advice that you get from these medics when dealing with such awful illnesses but it would be nice to be under someone's care without all these contradictions.

The Professor is a lovely man and I am sure the door will always be open should I need his help in trying another drug with prednisolone but I am having lots of problems with Ticagrelor given to me after stenting which is making me feel quite ill alongside lots of pain in my hips back and legs at the moment And being atypical with normal blood readings is so frustrating as you are made to feel like a fraud and you are not beleived which just adds to the misery and makes you question what's the point in seeing these people if they don't take your health issues seriously.

Thank goodness that people on this site know what it's all about it's nice to know that someone out there cares. Thanks for listening.

[Classicmichael in reply to PMRpro]

Hi PMRpro I am in Suffolk and although I am extremely grateful to the professor for his definitive diognosis, I was rather hoping that my day to day care would be more local as I do not feel up to the 120mile round trip to Southend Hospital due to recovering from surgery and facing more heart related problems in the new year.

I am not under any illusions regarding the limited help and advice that you get from these medics when dealing with such awful illnesses but it would be nice to be under someone's care without all these contradictions.

The Professor is a lovely man and I am sure the door will always be open should I need his help in trying another drug with prednisolone but I am having lots of problems with Ticagrelor given to me after stenting which is making me feel quite ill alongside lots of pain in my hips back and legs at the moment And being atypical with normal blood readings is so frustrating as you are made to feel like a fraud and you are not beleived which just adds to the misery and makes you question what's the point in seeing these people if they don't take your health issues seriously.

Thank goodness that people on this site know what it's all about it's nice to know that someone out there cares. Thanks for listening.

[PMRpro Ambassador in reply to Classicmichael]

There is a set-up called shared care where you see the consultant wherever but your GP does the day-to-day stuff under the instructions of the consultant and that would eliminate stupid comments like "why are you still on pred". Not sure how you go about setting it up though. Runrig on here may know it occurs to me since it was an option for her.

I'm SO grateful I have a knowledgeable GP - they are worth their weight in gold.

[Classicmichael]

Alas PMRpro both my knowledgeable GP,s have left the practice and the new one that asked me why I was on steroids was fresh out of med school, As for the Rheumatology dept at the hospital they hav,nt got a clue.

I will download the info to pass on next time I see them but will carry on self medicating as usual and be grateful for the help that I get on this forum for which I am so grateful.

[suzy1959]

As many of you know, I go to see the Prof. Who is my third Rheumy as I found the others useless. I have a 3 hour round trip to see him and have to pay for it myself, but it has been worth it. Luckily, I have a GP who admits he is no expert and fully supports me in what I ask for and whatever the Prof. Recommends. This is not officially " shared care" but it works very well

[Classicmichael in reply to suzy1959]

Hi Suzy, Looks like I will have to see the Prof again in the new year after I have seen my cardiologist and got that sorted.

I think the prof is keen to try me on lefleunomide (sorry about the spelling) to gather with the steroids to help me get things under control and get me off what seems to be endless flares.

Thanks for your support Suzy

[Runrig01]

Hi Classicmike, I'm afraid I can't shed light on shared care yet. The Eheumy I hope to see soon is over 200 mile away. She says I could transfer my care to her and do shared care with either another Rheumy locally or at the very least a GP. Basically the local Dr ensures blood tests are done and results viewed, reporting back concerns. I'm not keen on sharing with my current Rheumy (like you I inherited this new one, when the one I seen for 2nd opinion left), so hoe to share with GP if Leeds Rheumy is happy with this. When I learn anything further I will message you. Like PMRPRO I think you will need a GP or specialist to prescribe the Prednisolone. Good luck

[suzy1959]

Hi Michael, Just to let you know, I am on Leflunomide and it finally ( after 9 months and an increase in dosage) seems to be working where Methotrexate did nothing for me. Only time will tell if it really is working but my SER is down to normal levels and CRP down to 13 which is the lowest it has been for a long time. The Pred. never got those numbers down and I too have had too many flares to remember!

[Classicmichael in reply to suzy1959]

Hi Suzy, as you know the steroids are keeping my numbers down on the blood tests but doing very little to keep the flares and pain at bay.

Have you found leflunomide any good for damping down the awful pains?

Also have you had any unpleasant side effects with this drug which the Prof was keen to put me on.

[suzy1959 in reply to Classicmichael]

Sorry not to have replied sooner- Yes, the leflunomide seems to be taking much of the pain away in the way that the steroids never had, so I feel much better! The main side effect is that as soon as the Lef. started to really work i.e. when the dose was adjusted, my blood pressure shot up and I am now on yet another drug to sort that out. The Prof. tells me though that I will soon be able to start to reduce the Lef. too and so hopefully the BP problem will not last too long. Good Luck to you!

[Classicmichael]

Hi Runrig I don,t have any problems with the surgery dishing out the steroids, what is very evident though is that I cannot get these people to understand that They have to view my illness by looking at my symptoms and not be blinded by the inflammatory markers in my blood and assume all is ok because they are within the normal range because of the steroids.

It's so frustrating to have to keep on explaining this to the unenlightened medical profession who always think that they know better.

I will try and see the prof in the new year to help me reduce the dose of prednisolone alongside another drug.

I am sure there are lots of you on this forum that have had similar experiences.

Thanks for your kind support

[Lisa630]

I totally understand how you are feeling, I feel I'm going this totally alone, except for the great support here, My GP is totally uninterested, and Rheumy is young enough to be my granddaughter . . Not even daughter! She is really not interested.

I truly believe my health would have suffered more if it had not been for you guys helping me understand how to go forward with all this.

[Classicmichael]

Hi Lisa there is a wealth of knowledge on this site and until they educate some of these medics we will have to take what support we can from those suffering from PMR/PMR.

My theory is that because they are so rare the medical profession can't be bothered.

[PMRpro Ambassador in reply to Classicmichael]

But PMR ISN'T rare! It is the most common arthritic disorder in over 60s!

To be fair - there ARE some excellent GPs and rheumys out there. The problem is identifying one!

[Slach_na]

My heart goes out to you.

I think the pred dose is arbitrary, and prescribed too readily. I have no medical background but too much experience of Consultants in a no of medical walks of life.

I was diagnosed last week with ?PMR but because I also had flu, and had high ESR, I am having repeat blood tests next week and have agreed, for 7 days only, to taking 15mg pred.

This is because, having had PMR before, I know it can cause mania, memory loss, confusion....as well as other common serious side effects. I would rather be checked weekly for GCA then take steroids if nec to save sight and manage the pain.