After 15 months and tapered to 4mgs. Prednisone, I thought my face would be back to normal. Is this typical?
Also does the prednisone give a touch of acne at age 74? I know that compared to the amount of pain that I’m in that these other issues are no big deal but it’s bad enough to have the pain and look like I aged 10 years this year, lost my beautiful hair and acne too. And my jeans are too tight and I just want to hide in my bed all day.
Yes, I do push out when it’s not 100 degrees snd humidity is 100. I want my pain to leave and my old self to come home.
I’m on Actemra and was under the belief my pain would just go away but 38 shots later and I still take pain medication.
I thought 36 years of fibromyalgia was dreadful but compared to this disease, that was a walk in the park.
I have a rheumatologist appt. Tuesday and hope she has some answers.
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Leeleep
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Hi there you sound just like me only my problems started 18 months ago the predisinone was no help to me and I also got the moon face and lost so much hair I've recently invested in a hair piece costing a lot of money but it's so depressing when all these things happen plus the pain I thought it's important to ME! It's not ready yet hopefully it will be good, I have an appointment with a doctor Robert Hughes highly recommended privately by the others on the forum I'm hoping he will help, they have just told me my continuing pain is caused by multiple fractures on my pelvis they missed it wHen I had my pep scan months ago! Anyway hopefully we will both improve soon good luck
I know who Dr. Hughes is and if I lived in England I might also want to see him. I don’t have underlying issues like you but I’m still in continuous pain. I would like to hear from you and follow your journey to recovery.💜
Ofcourse I will let you know I'm going to see my regular rheumy tomorrow as well I'm going to write down if possible as I forget the minute I walk out of the room here's hoping! Regards glenys
The visit today with my usual rheumy was one way good as he says my blood test shows a marked improvement and could be that the polymyalgia could be going in to remission he wants me to go down to 10m predisinone but said the pain I'm having is caused by the fractures which in turn is caused from the steriods and nothing they can do but that the infusion I had of alendronic acid at the hospital will help the bones immensely see doctor Rod Hughes for a second opinion tomorrow I'll let you know what his opinion is? Regards
Of COURSE your blood test is OK if you are at above 10mg pred. It doesn't mean that the PMR is going into remission - except drug induced. Reduce the pred too far and you'll find the symptoms reappear and the markers will probably rise again.
Is that what she was told? I was under the impression that only Forteo actually builds bone. Prolia is only the same as bisphosphonates - and it too has problems when you want to discontinue it. After stopping it the bones lose density very rapidly and that often results in vertebral fractures. - so you have to switch to alendronic acid or the like.
PMRpro is right of course. In fact Prolia has an even more dire effect on the osteoclasts than bisphosphonates and initially most concerns related to the fact that these cells are part of our immune system and it was feared that by basically killing them we would be harming the immune system. As it happens it's the rebound osteoporosis which occurs after discontinuing the treatment which has proven most serious.
No - just Prolia/denosumab. They are different mechanisms. On stopping Prolia you now have to take bisphosphonates - which does rather beg the question, why bother in the first place!
Actemra is also just a very expensive steroid-sparer, it doesn't cure the PMR, a lot of patients still require some pred. It sounds as if you might need a bit more than you are on because in PMR/GCA pred is the painkiller - normal painkillers rarely do anything.
The weight gain will go eventually but everyone is different - I lost weight while still between 10 and 15mg but I worked on it very very hard by cutting carbs drastically but others don't lose weight until they are off pred altogether. One friend had put on about 80 lbs just like that with GCA doses of pred. she didn't lose an ounce until she was off pred altogether and was in a supermarket one day when her skirt fell down! She hadn't noticed the weight just melting away.
My rheumatologist feels that the Actemra can be used alone if you see her before anyone else has you hooked. She likes to start people on it alone but her goal is to get you off ASAP and use Actemra stand alone. She uses plaquenal and methotrexate whenever she can if the Actemra is a problem.
She has done her own extensive research to get proof has she? The clinical trials were done using both together because it would be unethical to do otherwise: there is no proof at all that Actemra can reduce the inflammation and swelling quickly enough to prevent loss of sight in GCA. It may do - or it may not. Nor is there any proof at all that plaquenil helps - except anecdotal I suppose.
And Actemra does not necessarily stop the disease process either - as was found at post mortem examination of a patient on Actemra whose blood markers were fine and she felt well.
It is a good addition to the arsenal - it is not necessarily a miracle drug and I really feel doctors shouldn't represent it as such.
Bless you, moon face is just not funny yet people always say it shouldn’t worry you but it does. I have just come back from an amazing week in Italy with husband and granddaughter gorgeous photos of the two of them but the couple with me in all I can see is a fat face ☹️
It’s a lot to handle with all the disease symptoms too. Sounds like it’s helping you though and as we all know, that is truly all that counts. We do get impatient.
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