Side effects predictions/experiences
Posted , 13 users are following.
Im now into about 8th month at around 10mg, despite instructions and warnings from Rheumy. I'll stay as long as it takes but I'd like to know at what dosage and how long it takes for some of the side effects to leave. I'm speaking about things such as memory problems, tremor, purpura, balance loss, etc. I'm sure I won't see any improvement at 10, but it would be nice to look forward to loosing some of the worst when I can get my dose smaller.
Paul
2 likes, 68 replies
elisa4 paul45653
Posted
The good news is that the body recovers within 6 month after stopping taking it.
Personally I believe that stuff should be banned as it almost killed me, but sadly there is no known substitute, except you go on morphine patches for the pain, as I did, Today I need neither of it. Don't give up hope , but listen to your inner voice, your intuition!
EileenH elisa4
Posted
It is a powerful drug, I won't disagree with you on that, but in some people it is the solution to the threat of life-changing illness. Morphine isn't sweeties either and even it does not always work as a pain-killer in PMR. One in 6 patients initially diagnosed with PMR go on to develop GCA, giant cell arteritis. If that happens you are faced with a stark choice: take pred or risk going blind. Morphine will not help you there and pred is the only drug yet identified that will stand between you and being dependent on others for the rest of your life.
Come to that - my granddaughter would be dead without pred. She has severe brittle asthma and it has brought her back from circling the drain on 3 or 4 occasions when she wasn't responding to the other drugs.
I'd prefer it were not banned!
lodgerUK_NE elisa4
Posted
Without Prednisolone, I would be blind and not typing this answer to you.
Yes, it is a powerful drug, probably the most powerful we have, but the upside is we know it and we know all the possible side effects, which we don't know with other drugs as they have not been around so long.
It is not used or prescribed lightly, in fact sometimes you have to battle with medics who are reluctant to prescribe it longterm as they worry so much about the people to whom they prescribe it.
When you say "it gave you Cataracts", can I point out that people get cataracts who have never ever been prescribed Prednisolone. All of the many side effects listed can occur without ever been prescribed Prednisolone and they are then dealt with.
After 5 years on Pred and then 3 years off pred, I have just been told I have the beginning of cataracts. Do I put that down to Pred or is it because I am now 76. If the GCA does not stay in remission, do I then say 'No' to pred and go blind? The cataracts can be removed, the blindness cannot be reversed.
I am allergic to morphine and penicillin so neither of these drugs are of use to me.
lodgerUK_NE paul45653
Posted
There are tips and tricks to help you combat the side effects, these have been tried out by many people with PMR and/or GCA. Not all of them work for everybody, some of them work for one person, but not for others.
Tai Chi helps for Balance problems and so does gentle exercise.
There are websites for both PMR and GCA run by the three charities (all linked) and it would perhaps help you to visit them and read the Newsletters and patients experiences.
7 years ago there was this forum and little information, now there is more and as you learn more the old adage 'Knowledge is Power' comes into play.
We, as patients, need to educate ourselves and help ourselves through this illness. We do this by seeking information and help from other sufferers.
There are Support Groups throughout the UK as well, you will find these on the websites.
gwendoline333 paul45653
Posted
My experience of long standing over 15 years with Pred. is apart from putting on weight and knowing there is possible bone deteriation there was no other side effects that I can think of at the moment. I have just been put back on Pred. in the last week after being off it for 3 years.
The tremors, balance loss and many others that I have experienced over the last 2.1/2 years were from Peripheral neuropathy first and the in the last week I was also diagnosed with PRM and GCA, hence back on Pred. I also have Sjogren's Syndrome and other autoimmunine problems.
I am on Lyrica for the PN.
I have tremors when I am tired or basically have been unable to get enough sleep or am stressed. Balance loss has been with me for sometime too so I walk close to walls when I can so I can bounce off rather than fall over.
Tomorrow I will start a thread of my own but I am too tired now so will just read the others here.
Have been happy to find this group. My GP has treated me like a hypochondriac for so long and when I tried to describe the hip girdle pain to him he got up and wheeled me out of his office. Since then I have been afraid to mention being in pain and it is continual.
lodgerUK_NE gwendoline333
Posted
google pmr and gca and you will find three websites and they all carry information on support groups, with a bit of luck and a fair wind you might just find one near you. Vasculitis Uk can help with Sjogrens.
lodgerUK_NE
Posted
You would change a car mechanic if he was rude.
MrsO-UK_Surrey lodgerUK_NE
Posted
As for your GP, I echo lodger's advice - he is being paid to care for you not dismiss you so rudely, and he definitely needs reporting.
If you have a Nordic walking class in your area (often run by Age UK), you will find that walking with poles can do wonders for balance problems - it can also help to avoid the risk of steroid-induced bone thinning.
I do hope that your PMR and GCA symptoms are improving on the steroids. There really isn't much that can help with the fatigue caused by both the inflammation and the treatment especially in the early days. Just rest as much as you can - don't try and fight it. Lots of good luck wishes.
tina-uk_cwall gwendoline333
Posted
EileenH gwendoline333
Posted
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
click on this - and it will come up as if by magic.
With the others - change your GP and complain about your present one to the practice manager. That is NOT acceptable.
Whether you do nordic walking or not - go to an outdoor shop and ask for help to choose some walking poles. They will help your balance and you don't feel as old as using walking sticks or crutches. They can also be telescoped to make them easier to carry. Loads of people use them here where I live in Italy.