what to take besides prednisone

[Uzziah7]

taking 10mg prednisone now, been on prednisone for 2yrs, doctor wants to get me off prednisone ask me what i thought about cell cept or rituximab, has anyone tried these or know anything about these, also what have people tried besides prednisone and had any luck with

[Hidden]

I have been on cellcept for almost a year. I have committed to it for the moment and have been able to reduce to 8mg pred. To be honest in the long run I would probably have just stuck with pred as less serious potential side effects....cataracts Vs skin cancer. The first 6 to 8 weeks was terrible. Nausea headaches etc as they increased to full dose.

At the moment I feel a bit stuck between the devil and the deep blue sea. But while I reduce without flaring I will proceed. First major flare....I will taper cellcept and just go.back on pred at higher dose.

Don't know if that helps. If you haven't tried a slow taper plan like Dsns then speak to Dr about that before you add more drugs as pred is the only proven helper.

[Uzziah7 in reply to Hidden]

thanks very much for your input

[Rugger in reply to Uzziah7]

Today is the 2nd anniversary of my diagnosis with PMR and I read that the mean duration can be 5.9 years, so those of us at 2 years shouldn't be impatient to get to 'Club Zero'. This is hardly what you want to hear, but I hope it helps you to stick with the pred for a while yet.

Me; PMR 2 years today! 2 flares. Lowest pred 4mg, currently reducing DSNS from 8 to 7.5mg.

[Uzziah7 in reply to Rugger]

thanks for your reply, it's really nice to hear from other people who suffer from PMR, what meds they use and how much, and how they deal with every day life with PMR, thanks again

[DorsetLady PMRGCAuk volunteer]

Hi

As others have said you’re only 2 years into a longer journey that most doctors appreciate, and why add in another drug just because “your doctor wants you off Pred” . Other drugs may give you nastier side effects than Pred do, and as you don’t seem to be having problems with those or with reducing - best leave things as they are!

[Uzziah7 in reply to DorsetLady]

thank you very much for your reply

[piglette]

I really don’t understand the thinking of some doctors. I am sure we all want to be off pred but just by adding extra meds does not necessarily mean that the PMR will give in, it will just carry on its own sweet way and will go into remission when it wants. Of course there are some additional meds that may or may not help reduce pred, which vary from person to person.

[Uzziah7 in reply to piglette]

thank you for your reply, its nice to hear from other people who have been there and can give us healthy and useful advise

[suzy1959]

I have tried 3 DMARDS ( Leflunomide, Methotrexate and Cellcept) in an effort to reduce the Pred. None have worked in that I still flared every time I reduced. Pred. is what I need!

[Uzziah7 in reply to suzy1959]

Thank you for taking the time to reply, all this kind of information is great

[PMRpro Ambassador]

He asked YOU what YOU thought about cellcept or rituximab? I've heard it all now!

There is no evidence that either cellcept or rituximab have any effect in PMR or GCA even though they are used in other forms of vasculitis. Corticosteroids remain the mainstay of management of both PMR and GCA and the only other successful option is to add tocilizumab/Actemra which has been approved for use in GCA after successful Phase 3 trials. It is however very expensive - and not everyone qualifies for it in GCA. Some doctors are using it in PMR - but how they get funding is an unknown.

PMR has a median duration of 5.9 years - and the low doses of pred used in PMR are not a risk. The same "adverse events" would have been found in an age-matched population who were NOT on pred:

practicalpainmanagement.com...

I really don't understand why doctors think they know better than the experts who do the research...

[Uzziah7 in reply to PMRpro]

Thank you very much for the reply, this is the kind of information I was looking for, I hope other people will see this so they don’t have to suffer for weeks and months trying to get use to a drug that will end up not helping them plus having to suffer the side effects

[jrsteiger9]

Hi Uzziah7: I have been on Prednisone for a little over 2 years. Started at high dose and was weaned down to 2 mg. a day. This took approximately 8 months and have been on the low dose for 18 mos. I do not have PMR so I don't think I can help you. I have a rare progressive lung disease. I will tell you my doctor kept me on the Prednisone because it's the only drug that helped me and also because I'm maintaining on a very low dose. There are only a few drugs out there for my disease and they are all experimental with lots of side affects. So, he thought as long as I was feeling pretty good, he would keep me on the Prednisone. I live at a high elevation (7000 ft.) so I do need to be on oxygen all the time. I was diagnosed after having an open lung biopsy (very painful) and my disease is called "constrictive bronchiolitis". All I can say is without the Prednisone, I cannot function so it has made a big difference in my life. Best of luck to you.

[Hidden in reply to jrsteiger9]

I hope you continue to feel pretty good! Lung disease is a hard road to travel and I am glad you get benefit from a relatively harmless drug. My dad and grandfather had occupationally induced lung disease and i know my dad benefitted from his steroids.🌻

[jrsteiger9 in reply to Hidden]

Thank you. I do feel good right now. The oxygen is difficult but I have no choice due to the high elevation where I live. At lower elevations (near sea level) I do not need the oxygen--YET. At some point I will need it wherever I am but for now I do get a break when I travel to low elevations. I make sure I go somewhere at least every 2-3 months so that I can get off the oxygen for a few days and feel normal again. I need that for my mental health. Thanks for the good wishes and I send them back to you.