Newbee
Posted , 16 users are following.
for the past year i have suffered severe pain and stiffness in my upper legs, thighs and upper arms. i have been referred to a rheumatology and hav at last got an appointment for july. my Dr repeatedly gave me pain killers of all description which rendered me unconcious most of the time. my husband had to do everything for me and i felt so bad i thought about suicide. i did not feel comfortable telling the Dr this but in hindsight it was when the Dr actually seem to take me seriouslly . at first she thought it was fibromialga but looking on this site i realise people with this had good periods and bad periods .i only had bad periods and it never gave up. i then said to the Dr who thought it could be pmr and after blood tests she agreed to check out with the hosp cosultant who agreed to let me have prednisalone. i got the tablets on friday and overnight a miracle occurred, from my husband getting me in and out of bed, up and down of chairs, washing my hair under the shower, drying and dressing me, to me getting up showering and dressed, going out and walking going for lunch and some shopping. I felt so elated I cried when I met people I knew, telling them of the miracle . I was started on 15 gr after 3 weeks my Dr reduced it to 12.5g I noticed the drop I felt more pain and stiffness than when on 15. Last week she dropped me to 11g I am still stiff and sore but manageable. However I do have horrendous sweating and can be very tired. I thought I could put up with this as it is preferable to what I had before but it is horrendous, I am soaking wet, feel like my whole body is on fire and yet my skin is really cold. Is this normal and is there anything that will help and is the Dr reducing at a proper rate as it scares me to go back to were I was 2 months ago. This is the first time I have gone onto a forum so I beg forgiveness if I make mistakes. I don’t know if I get messages back or not so here goes and thankyou in advance to any one who can give me any advice .ps I am going away for week end first break for a year so I might not be able to respond till mon xx
3 likes, 28 replies
kay97415 rosemary67215
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There are some lovely helpful and knowledgeable people on here so you are amongst friends. Hope you have a good weekend and come back refreshed. Kay
rosemary67215 kay97415
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xxrosemary
erika59785 rosemary67215
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The fatigue can be tough to take because we are not used to it. We like to be busy!!! Rest is best!
rosemary67215 erika59785
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misdiagnose rosemary67215
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rosemary67215 misdiagnose
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pam7653 rosemary67215
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You sound like yours was really bad if your husband had to help you that much. Wow. The first night on the Pred I must have been to the bathroom 8 times, I couldn't sleep at all. I did get use to it. I'm ok now. I'm on 5mg indefinitely. I've tapered down twice now. By the time I got to 0mg it came back in a week. I'm in my 2nd yr and somewhat happy at 5mg. Just taper longer. Don't rush it.
MrSolo_UK_Lancs rosemary67215
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ptolemy MrSolo_UK_Lancs
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tina-uk_cwall MrSolo_UK_Lancs
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please be careful re the bone protecting drugs, has your Dr tested your current bone density to check if you really need to take them. They can result in long term problems, so do be careful. All the best, christina
EileenH tina-uk_cwall
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Given your active life I would insist on a dexascan to be sure you really need anything more than the calcium and vit D supplement that we all need. That might be enough for the moment. If your GP is sticky, there are a few places who will do one privately for about £50 - well worth it to know for sure.
And some reading material:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
the first post gives a load of links, the NE of England support group site is particularly good with a couple of resources you can buy for all the information you need in a small pack (DVD and booklet). It's all on the forums but takes a long time to find! There are 2 others in the UK - all 3 are different in format and style but all friendly and useful.
But having done your reading - come back and ask any other questions you may have.
snapperblue rosemary67215
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Sigh.
A familiar story on this forum! As you will have gathered from the other posts to this forum, when your pain and stiffness returned at 12.5 mg, this was a hint that further reduction would not lead anywhere good!
As Eileen says, the point of the prednisone is controlling the inflamation and pain. It does not cure the underlying disorder, so you have to keep taking prednisone until that dies out. You are not winning anything by taking too little pred to control the inflammation- you just have BOTH the ill-effects of inflammation and the side-effects of prednisone. And the pain.
It is worth decreasing the dose to test what the effective lowest dose is. But you have found that 12.5 or 13.75 or 15 may be needed for you. A lot of doctors seem to think the goal is "getting off prednisone" (or at least reducing the dose) as fast as possible. It is not clear whether you have talked to your doctor about the response you experienced- she may be willing to increase to 15 and then reduce much more slowly.
There is no need to be in extreme pain- or much pain at all (except for those who can't take prednisone)- with PMR. That part of PMR is treatable!
Best of luck!
rosemary67215 snapperblue
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