PMR QUESTION: Spoke with my doctor on the phone... - PMRGCAuk

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PMR QUESTION

remission profile image
27 Replies

Spoke with my doctor on the phone this morning for our appt., she in turn spoke with a Rheum. for advice, given that I am at 2.5 pred. she is suggesting we add in

Celebrex an anit inflammatory which should allow me to reduce and eliminate the pred. Has anyone else gone this route and any side effects etc? thanks, Sue

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remission
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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

TBH don’t see the point in adding in another drug with its own set of side effects when you are as low as 2.5mg ....especially a NSAID which incidentally shouldn’t be taken with Pred* see below - and although used in Rheumatoid, Osteo and Juvenile Arthritis is not normally used for PMR.....

*Drug Interaction -

Monitor closely

Celebrex oral + prednisolone oral

Significant interaction possible (monitoring by your doctor required)

Celebrex oral , prednisolone oral .

Either increases toxicity of the other by added drug effects

Additional Information: Increased risk of gastrointestinal (GI) ulceration.

SheffieldJane profile image
SheffieldJane

No and I am not familiar with the drug and baffled by your doctor’s thinking. You are nearly out of the woods on a tiny, relatively harmless dose that some people remain on for ever. Why add another drug into the mix?Has your adrenaline function been checked? If you have symptoms - it is more likely to be that.

PMRpro profile image
PMRproAmbassador

Depends on what the pred is covering - Celebrex might help OA pain, it rarely does much for PMR pain. Personally, I consider the risks of a dose of pred that low to be probably considerably less than those of Celebrex, especially when it is used regularly long term. It may be less irritant to the stomach but it still carries considerable risks for stroke and heart attack.

webmd.com/arthritis/news/20...

Prof Dasgupta told us last summer that he often keeps patients on 2-3mg pred as it reduces the risk of relapses of PMR which do often happen when patients get below 2mg. Many will be able to achieve that with less than 2mg - but not with zero pred.

Hosers2 profile image
Hosers2

I have made the transition from Prednisone to Hydroxychloroquine (HCQ) since January. At the time, I was down to 7mg Prednisone, but developed Macular Degeneration in one eye. The Ophthalmologist strongly suggested that I eliminate all steroids asap, so I went to my Rheumatologist for ideas. She agreed with my ophthalmologist that Hydroxychloroquine would be an alternative.

HCQ takes two or three months to completely start working. So I was started on 200mg, twice a day, along with Folic Acid tablets. I also took Methotrexate once a week. In the meantime I reduced Prednisone every five to seven days by 1mg. By mid February, I was down to 1mg Pred. Each step downward did cause me some early morning aches in my shoulders, wrists and hands for the first day of reduction. Reducing from 7mg to 1mg in six weeks was a big risk. But one I was willing to take, considering I was losing my eyesight. Once on 1mg of Prednisone, I stayed there until my next Rheumatologist appointments and blood tests.

March 5th, my 9 blood tests came back: All normal!. So I reduced the Pred to 0.5mg for a week and then stopped completely. It has been over a month without Pred. I still awake at 2:00 am to take half of the HCL (just like Prednisone). And on a few days, I have some shoulder tightness for fifteen minutes or so.

After 4 shots in my right eye ($2,500 ea), the Ophthalmologist did another scan of my eyes. All of the Macular Degeneration signs have disappeared! I will need to continue the shots, spaced further apart (every six weeks) for a while.

So, at this point, the transition off of Pred has been successful for me. But I will be holding my breath for a long time to come, hoping it works long term. (My Rheumatologist has not indicated how long I will need to take HCQ).

HCQ is not without its problems as well. (One of the side effects is eye damage if taken in high dosages). But Lupus patients take HCQ successfully for their lifetimes, so it appears (to me) to be safer than the side effects from Prednisone.

DISCLAIMER: I am not a medical professional. I’m just a patient with PMR, trying to cope. I relate my experience(s) as to the causes and effect of (my) PMR, in hopes they will help others with this debilitating disease.

Duffer55 profile image
Duffer55 in reply to Hosers2

Wowsers!,that is almost identical for me. Although not the macular. I was struggling at 5 mg so rheumy upped to 7 mg for a while plus she started me on HCQ also at 400 mg a day. I am reduced back to 5 mg pred now and almost 3 months in on the HCQ. PMR pain seems better but i also have RA and it seems like I am now feeling more joint pain especially my shoulders. Time will tell to see how this works. Been on pred for 2.5 years now.

remission profile image
remission in reply to Duffer55

You’ve had a rough haul...have you tried CBD oil...I found it super helpful

Duffer55 profile image
Duffer55 in reply to remission

No i have not. Maybe i will research that a little

Hosers2 profile image
Hosers2 in reply to Duffer55

That’s great to hear. I would like to hear, from time to time, if you are successful in transitioning to HCQ. I know it is a long term thing. And the PMR can rear its ugly head at anytime. But I am crossing my fingers that it works.

remission profile image
remission in reply to Hosers2

I plan to post from time to time how I am progressing. I decided this morning after only a week to drop another 1/2, so I am in 2mg and feel no different today than yesterday and I plan to remain in two for awhile and wait and see how my body feels before the next reduction

Duffer55 profile image
Duffer55 in reply to Hosers2

Same here. I know she wants to get me away from pred , just not sure exactly what HCQ is supposed to do, but i am willing to give it a try. I will keep in touch

remission profile image
remission in reply to Duffer55

I shall keep in touch as well...I do not want to add another drug into my system...as I said, I dropped another 1/2 mg down to 2 mg of prednisone and I loaded lumber today and took on Tylenol fir the paint and this evening I feel totally fine

Duffer55 profile image
Duffer55 in reply to Hosers2

Well i am currently at 4 mg prednisone. My physical therapy was most beneficial for allowing me to be more active. However life got ahead of me so i was not able to keep up with the exercises. My neck and shoulders have always been an issue so I am going back to PT for that and a refresher course on lower body. I should add I have plantar fasciitis in left foot and a bad knee in right side so at times makes for fun walking. With more physical activity I hurt more at end of the day. Although I have been diagnosed RA, so far no problems just he markers for that. I continue with the hydroxychloroquine but she dropped the idea of adding methotrexate for now.

Longtimer profile image
Longtimer

Very interesting....I hope you keep well....

piglette profile image
piglette

What on earth is your doctor thinking? You need a DMARD such as Methotrexate to help reduce, although they do not work for a lot of people. If she thinks an NSAID helps PMR pain, forget it. Pred is what works. She should also be aware that pred and NSAIDs such as Celebrex are contra indicative. Tell her to look it up! My GP is always suggesting Naproxen so your GP is not the only one who is not fully versed in the drugs they prescribe. I find it quite frightening. Tell her from me!!! I have worked with the drug industry for thirty years.

PMRpro profile image
PMRproAmbassador in reply to piglette

Don't think a DMARD is worth it at 2.5mg. 12.5mg maybe ...

piglette profile image
piglette in reply to PMRpro

I totally agree, but at least it theoretically helps reduction of pred, I don’t know how she dares suggest that an NSAID will get someone to zero, if the person has PMR.

remission profile image
remission in reply to piglette

She is going by having consulted with a Rheum., who said mtx was more for people on high dosages of pred to reduce and that celebrex is better on a low dose

piglette profile image
piglette in reply to remission

I was just trying to get the point over that the doctors in question do not seem to know much about the drugs they are prescribing!!!

PMRpro profile image
PMRproAmbassador in reply to remission

Wrong on both counts! MTX MAY help reduction in some patients - but there are no guarantees.

remission profile image
remission

thanks for your info, rec'd similar comments and got me thinking, be far safer to just keeping tapering with only the pred.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to remission

Yes - you are right. Much as we may not like Pred, better the devil you know!

Arflane97G profile image
Arflane97G

Nope, when I got to 2.5 mg was just told to reduce by 0.5 a month

remission profile image
remission

are you clear of the pred now?

Lonsdalelass profile image
Lonsdalelass in reply to remission

This is interesting... My rheumy has also intimated, when I was at 2.5, that something such as methotrexate could be given to help me reduce. I was not keen, so feeling determined to prove I didn't need to, have since managed to get down to 1.5. Again on Monday when we spoke he said if I had trouble getting any lower then methotrexate would be an option, although of course he was pleased I had reduced. There's no way I'm going on mtx or anything else, especially when on such a low dose. My next appointment isn't until four months time, we'll see where I'm at by then. But I'll be staying put at 1.5 for a while and he knows this. I do wish they wouldn't push us all to get off the blimmin steroids when they gave them to us in the first place! They should just be happy we've got to where we are, at a lower dose than last time.

remission profile image
remission in reply to Lonsdalelass

couldn't agree more...initially i was on a high dose like 40 and then my doctor had a laid out plan for reducing and i was down to ten in a short time, but on my own decided to speed up the process and reduced every three days and was down to 5 and feeling good when my doctor insisted it was too soon and upped the dosage, otherwise I'm sure i would be where I am now at 2.5 about a year ago.....i really wish they would listen to their patients and take some notes from us

PMRpro profile image
PMRproAmbassador in reply to remission

They really can be nuts - if the patient can reduce quickly and not have a return of symptoms that is fine. Don't blooming well complain. And when they can't reduce quickly - accept it.

remission profile image
remission in reply to PMRpro

I followed my doctors advice then, but now I check with this forum before making changes and follow my gut feelings

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