PMR What The Heck

[zag1999]

Diagnosed in March 2018, placed on 40mg of prednisone a day. Been weaned down to 15mg a day. Prior to being placed on pred, it felt like I lifted weights all night when I got up in the mornings. Been told this may last a life time or it could just go away on its own. I mostly wonder is there any other medicine that can/will fight this?

[HeronNS]

No there really isn't anything else. But 40 was a high starting dose, good that you were able to get to the more reasonable 15 quite quickly. Hopefully you are now on a sensible taper? Not too fast.

[Patience47]

20% go into remission in 2 years

75% in 5.9 years

5% never go into remission

Oh, it can go into remission and return again.

Hope this helps,

Edward

[Hindags]

As I understand it, it's only Pred or Pred and Actemra (Tociliaumab). Actemra is relatively new in the treatment of PMR and only is FDA approved to date for GCA.

This is what I've gleaned from what I've read here and from some other readings. If I'm mistaken I'm sure someone will correct me before long and set you straight. Also you can search this forum and find whatever else is written here on this issue.

There are some rheumatologists in the USA who are diagnosing PMR as maybe GCA/PMR and using actemra to help people taper Pred more quickly. Actemra actually treats the underlying cause of the inflammation as opposed to Pred that just controls the amount of inflammation and its effects.

But usually what people on this forum are reporting is that they still have to slow down on the taper when they get under 7. At that point, whatever the status of the underlying disease, one still has to take Pred until adrenal glands that have turned off slowly come back on board as Pred is tapered below the physiological level, 7mgs +/-.

[Hidden]

Hi, I'm sorry to hear about your recent diagnoses. I hope your taper-down goes quickly and smoothly... Maybe you'll be one of the lucky one! Ya never know. All the best!

[DorsetLady PMRGCAuk volunteer]

Hi zag1999,

Have a read of attached-

healthunlocked.com/pmrgcauk...

You’ll be one of the unlucky ones if it lasts a lifetime, but 4-5 years is not unusual!

[zag1999]

You know that is really scary. I had no idea this would go on for so long. I am at 15 mgs a day and still am feeling stiffness and aches in my arms and it is starting in my hips today. This is really kicking my a**. I have only been diagnosed now for a couple of months and have a new understanding for those of you that have had this for years.

I am in the US and have not heard of actemra. Is anyone on this and can tell me about it?

Thanks

[PMR2011 in reply to zag1999]

Hi zagg1999. Actemra has only been approved in the US for PMR’s mean older sister GCA. It is very expensive and has it’s own long list of side effects. Afraid Pred is likely your only choice, however if you actively manage the side effects it works well. Sounds like you might need a higher dose right now. Enough to manage the pain at least 80%. Stay at that level until it is all managed (usually 4-6 weeks) then consider tapering. There are some great tapering plans on this site.

Sorry you are on the journey longer than you thought. Please treat yourself well as you have a serious illness. Good idea to explore the wealth of information here, and the members are amazingly supportive. You’ll get through this!

[shazstep in reply to zag1999]

Hi Zag, I gave actemra a go. For me it is not the correct medication due to the reaction I had. While on the weekly injections my blood test numbers came back the best they had been. Unfortunately the reaction I had to the last injection has totally put me off it. I was itchy all over, a rash and uncontrollable coughing. I am in Australia and it is not covered by the government so it was costing me over $200 a week.

I would advise anybody that has the opportunity to give actemra a go. The more people on it the more information will be collected which hopefully will benefit us all.

[PMRpro Ambassador in reply to zag1999]

15mg is the usual starting dose for PMR - so I would wonder if maybe it isn't PMR or just plain you are trying to do too much. But starting at 40mg and reducing from 40 to 15 in about 6 weeks is NOT the way to go about managing PMR and a good plan now would be to stick at 15mg for at least a month and let things settle down. THEN reduce SLOWLY Not at the rate you've done so far!

[zag1999]

Thanks DorsetLady, that was a good read.

[Nap1]

Actemra

[gemini29]

Hi I advise you research Ldn Low Dose Naltrexone this has positive reviews for many illnesses, I have recently started and after a few months my stiffness is the easing for the first time in many years. I am very optimistic about this. Join ldn support group on Facebook for lots of information. Good luck.

[SheffieldJane]

Whoever explained that to you in those terms has given you a rather depressing frame to put this illness in. I fully expect to get better, completely and statistically I probably will. It is early days for you ( I was diagnosed in March 2016). What I need to do is support the health that I hope to regain one day and that means cutting out all refined, processed foods and sugar, aim for a very low carb diet and get out there after a long miserable winter and start building up my distance walking again. I had got up to 13,000 steps according to my Fitbit. I have really slid backwards on all counts this winter. I have to guard against motivational apathy. That’s what I would tell myself if I was at your stage. As for you, you need to really rest and pace your activities and taper Pred carefully and slowly. If you throw in the healthy diet, you will bless yourself when good health returns.

[valrene]

Hi zag1999 have been on prednisolone for 3years first started on 20mg after 6months started reducing fine until 10mg but after that I was up and down trying to reduce, in the end managed to get to 5 mg told Rheumy couldn’t stand the pain any longer, he put me on methotrexate for a few months but pushed my liver enzymes up too much, then he started me on 10 mg of Leflunomide after a few weeks my inflammation levels started coming down had less pain, then my legs,ankles and feet started swelling so he upped Leflunomide to 20mg ( it did give me bad tummy trouble but persisted no problem after a few months) took a few months all my swelling went down with my inflammation levels really helped me, down to 2mg some days and 1mg other days hoping to be off steroids soon, I did write on here a long time ago apparently Leflunomide doesn’t help every one think I was one of the lucky few it did help, hope you don’t have to wait too long before you are free of pain.Valx

[Grants148]

The other posts have said it all zag,l hope things get better for you soon.

[zag1999]

You are absolutely correct. I have spoken with my Dr. showed him the tapering schedule that DorsetLady provided to me and I am starting on 20mgs a day and reducing to 15mgs under the 5 week schedule.

[Ricketts40]

I too have just been diagnosed with Polymyalgia in March/April 2018. Have been prescribed Pred to take 4 x 5gm per day for 7 days then back to GP after 1 week of taking. Not too sure what happens after that other than my GP explained it would take about a year to 18 months to wean off. Judging by a lot of the comments on here thats nearly impossible. I do have a chart to follow regarding the gradual drop of dose which was put onto this site, my GP also said she has a chart too, but from what I have read Dr's seem to rush you which means you can find yourself back to square one. I think I will try the chart found on here as sufferers know more than GP's in this instance. Nothing was said to me regarding my diet while on these Preds other than reducing the carbs which I and trying to do already and also eating healthily. Is there any other eating plan I should be aware of, or times for taking Preds. I already take thyroxine early in the morning so it might not be advisable to take the two at the same time.

[PMRpro Ambassador in reply to Ricketts40]

The median duration of PMR is 5.9 years - a year to 18 months is in his dreams for more than a few patients...

medpagetoday.com/rheumatolo...