Steroid supply drying up
Posted , 9 users are following.
I saw my Rheumy before Christmas and he said as I've reduced to 4 mg/3.5 I should continue to reduce .5 mg per month and come off them by the end of winter. He also dismissed (sorry discharged) me saying if any pains appear to ignore them as just caused by ageing and not PMR. My CRP was at 6 which he said was slightly raised but not to bother with any more blood tests. He also pointed out low salt and blood pressure but said nothing to worry about. Oh and weight loss.
I had a very busy and stressful Christmas and still suffering after effects. I have continued to reduce using dsns to 3 mg but my repeat prescription no longer exists and am struggling to get a refill from GP. Also, no appointments available for 4 weeks. Too much pain to reduce again yet so a bit confused as what to do next!
0 likes, 16 replies
elizabeth20640 Whisper2003
Posted
Hi have you any pain at the moment, I'm down to 5mg but have stayed on that dose for last 3 months, when I last seen the rheumatologist in September well he was someone off the team, and wasn't very nice, I've met a lot of team and are all really nice and rheumatologist are lovely,
but guy I seen in September was horrible, he asked me my age and when I said 65, more or less wrote me off,
like you my CRP was 6 ( it had gone down to 3) and I had pains in my thighs, he didn't want to tell me what my CRP was and then he said that's normal, when I said to him it was 3 the last time,
he said sure that can be anything, he said food poison could cause that,
i said I don't have food poison, I have pains in my thighs, he ignored me,
told me not to be taken half doses, told me to reduce by 1mg a month ,
so ive stayed on 5mg, I had a lot of pred on hand cause I was on 80mg due to severe headache and loosing sight but it came back, so I was always frightened in case, I needed to take more pred.
now I'm back for a blood test tomorrow and seen rheumatologist on Thursday, and I make sure I see some else,
pains in thighs are still there, don't want to increase them,
can you not ring doctor and just ask for more pred?
take care
Whisper2003 elizabeth20640
Posted
Thanks for your reply. Yes your rheumi s suggestion of 1mg a month is a bit ridiculous so you are best to ignore that and if inflammation and pain is present then you neerd to wait with your reductions. My GP retired and I have a new young one who doesn't seem to have much knowledge of steroid doses for this. I tried to order my prescription on line but she hasn't set up a repeat and receptionist on end of phone doesn't see the problem. Have phoned twice today and waiting for news! I have 5mg but only 3 days of 1mg left so not sure whether I can chop up 5's to get correct dose!
EileenH Whisper2003
Posted
EileenH elizabeth20640
Posted
Really, no, even if food poisoning caused a raised CRP - it's pretty likely you would have symptoms of food poisoning - so what a daft thing to say!
Someone posted yesterday about a hospital who differentiated between REDUCING and TAPERING the pred dose. I asked how they differentiated: tapering is steadily lowering the dose by NOT MORE THAN 10% at a time. Which becomes increasingly important below 5mg because your adrenal set-up has to do its staged return to full-time working.
elizabeth20640 EileenH
Posted
Ye Eileen half of these people shouldn't be doctors.
I had bloods taken this morning and back to see rheumatologist tomorrow ( and hope I don't see doctor I seen last time. 😂But might ask to see someone different,
elizabeth20640 Whisper2003
Posted
Hi whisper have you had pain all along? Like at what dose did pain return?
Just looking back on my notes (always keep notes and record of bloods) when i had apointment with rheumatologist back in september ESR was 8 and CRP were 8 not 6 like I said. I was on 5.5mg then so I increased to 6mg and in October I got bloods done again and CRP was 3.5 and ESR was 5.
So it will be interesting to see what my results are on Thursday.
My CRP and ESR always reflect on pain I'm having.
Take careX
FlipDover_Aust Whisper2003
Posted
sounds like it's time to get back to your GP and DEMAND a prescription. Refuse to leave unless they listen to you - demand respect! - give them information to read (right there in front of you) and generally carry on. Being in pain is NOT OK when there's no reason to be! These people are not gods. Treat them like the idiots they are and educate them on what they need to do to do their jobs properly!
I'm sick of hearing about Drs who dismiss people who are sick and in pain like it's ok - it's NOT! Tell them so!!!
(end of rant!) lol
EileenH Whisper2003
Posted
If your CRP is already raised - it needs to be monitored in case it is starting a trend which would indicate returning/unmanaged inflammation. Not just ignored and dismissed as not relevant.
And REALLY good doctors advise not to reduce during the winter and DEFINITELY not by 1mg per month at this level.
Whisper2003 EileenH
Posted
I do really hope I will be off them soon as they are affecting my voice and I'm finding it difficult to be heard....Especially by rheumys, GPs and receptionists! I have run out of people available to take to appointments and make phone calls. though had a visitor yesterday who sorted the receptionist for me and 1 months supply should be ready tomorrow, fingers crossed. I will cut the 5mg in half when I reach 2.5. Thank you all for your helpful suggestions. You are always there, thankfully, when help is needed.
noninoni
Posted
Anhaga Whisper2003
Posted
Hi Whisper - so that explains your name?! Losing your voice can be caused by not using your voice. I read, when I turned 65, that this is when age starts to affect the voice, and the best way to combat this is to use it. Singing and reading aloud are suggested. At age 67 when I retired and suddenly started to spend most of my time alone I joined a community choir and also now sing to my own rather pathetic piano playing for about 15 minutes a day and read aloud to myself for about the same amount of time. Not suggesting that medication isn't also affecting your voice, but you may be able to get some strength back into it by trying some or all of these strategies.
Whisper2003 Anhaga
Posted
Thanks for that but unfortunately nothing comes out if I try to sing, I've had some speech therapy to no avail and been referred to ENT, 6 month wait.I'm 63.
EileenH noninoni
Posted
Because the cold doesn't help PMR - even rheumies feel that way, not just patient talk.
The level of CRP involved in PMR is way outside the CRP changes in cardiovascular problems. The hs-CRP only is of interest in a patient who has a normal CRP level and may be an indication of cardiovascular problems. It is irrelevant in an inflammatory vasculitis.
Whisper - I gave up singing because of PMR. I assume it was due to involvement of thoracic arteries and I had GCA symptom including cough and tinnitus. First my breath control went and later I could not guarantee what note would come out - not useful for a soprano! Now I have "lost" a section of register. Ah well - doesn't matter, no suitable choirs to join here.
EileenH Whisper2003
Posted
Anhaga Whisper2003
Posted