A little bit fed up: I’ve migrated to this forum... - PMRGCAuk

PMRGCAuk

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A little bit fed up

braininjurythepits
braininjurythepits

I’ve migrated to this forum from the very helpful ‘other side’ (with it’s tech problems). 65 year old female diagnosed September 2018. I started off at 10mg, absolute amazing result, tried to reduce to 9mg after a month or so, pain started returning, went back to 10mg for another month. Adopted the dead slow method again with hope, but symptoms started returning, back up to 10mg this week, but so far, I’m not yet pain free, I wonder if I’m not giving it enough time to do it’s work yet? Saw rheumy this week, and he wants me to start taking methotrexate. I don’t want to take any more medication with possible side effects. He also wants me to take something else for bone protection - I don’t know enough about this. Surely after only five months on a low dose of Prednisolone it’s too soon for all these add-ons?

The other thing that’s really worrying me is sort of spongey swelling above my collarbones, and at the back and base of my neck. I feel sure it’s a side effect of taking Pred, but Rheumy has booked an ultrasound next week. As always, I value the experience and encouragement that so many of you bring to us newbies....

22 Replies
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10 mgs is an very low start dose. 20 mgs is far more usual. My guess is that you never really got on top of the inflammation. The relief you experienced was just the contrast. I expect that you need a higher dose of Pred for a while, not another drug.

Thanks Sheffield Jane, I agree with you, maybe I should change my rheumy...

Where are you bitp? As you were started on SUCH a low pred I presume you are in America!?! The least you should have been started on was 15mg, but 20 and some even 30mg is what is usually advised.

I’m in London Constance!

Wow! You should be able to get much better help there. There are some good reumies there. I believe there is an excellent one in Southend which isn’t too far away.

Good luck! 💐💐

Sorry you’ve joined the PMR club, but you’ve found the right forum. 10mg is a low starting dose. Pred doesn’t treat the diseases it only managed the inflammation until the disease runs its course. 15-20mg is a more recognized starting dose which you want to be on at least 4wks possibly longer to clear out the built up inflammation. Then taper by no more than 10% of your dose every 4 weeks or so letting your body guide you. The trick is to find the lowest dose which manages the pain. This is a disease that lasts on average 5-ish years so take it slow or may risk a flare and have to start over. There have been many threads on bone health, diet and exercise you’ll want to explore. Don’t hesitate to ask if you have a question.

Thank you PMR2011, I suspect you are right, but I’m concerned to increase the dosage — to be honest, I’m frightened of what my rheumy would say! The other thing is, with the swelling in my neck and back, I also worry that it will also get worse if I increase the dose. I really don’t know what to do!

So sorry you are experiencing this. Welcome to the PMR club. I have all the swelling around my neck and upper back. I have been told it is the prednisone. Others may come along and tell you why. I agree with sheffieldjane. 10mg to start with seems too low. I began with 15mg. and Now at 10&1/2 after 2+ years of diagnosis. The methotrexate helps some people. Helps a little with the pain and it is suppose to help you decrease the prednisone.

Unfortunately the only way to tell if it will work is to try it. I have tried it and for awhile it helped me reduce my prednisone, but I couldn't take the side effects. I gave my self a weekly shot to help with the stomach upset, instead of pills.

This is quite the journey you are on and this forum will be invaluable to you.

Take Care

Lin

Thank you for your very kind comments Linny3

Hello, steroids make the body concentrate fat deposits in certain areas, namely the midriff, back of neck, face and above the collar bones. Even though I didn’t put on any weight and wasn’t carrying any extra to start, it still went there.

Yes, the puffiness near your face is a very common side effect. Annoying but almost certainly nothing to worry about. That being said, your rheumatologist is doing due diligence to have it checked. Now, if he'd only understand how pred works for PMR, which is quite unlike nearly any other disease....

Yes, it’s very confusing, but I see from a lot of posts that most take control of it themselves, and I must get the hang of that. I can cope with the swelling, especially as this time of year —I can hide it with a scarf!

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi

And welcome. Others have covered it really - probably too low a starting dose so initial inflammation already built up not cleared properly.

Guess you mean Alendronic Acid re bones - request DEXA scan to see if you actually need it - many don’t- a VitD and Calcium supplement - prescribed by doctor is usually enough.

As for MTX - more Pred is the answer in your case I think - not adding in another drug.

Have a look at this as well - may help you understand thinks a little better.

healthunlocked.com/pmrgcauk...

I have been informed by my doctor the swelling in the neck and shoulders is part of pmr

PMRpro
PMRproAmbassador in reply to Blackcat1M

Wonder what makes him think that - it is part of the TREATMENT for PMR though!! I didn't have the swelling in the 5 years of PMR/no pred - but it appeared once I started pred.

piglette
piglette in reply to Blackcat1M

I suppose he could put it that way although not exactly accurate, as it is caused by the pred not the PMR itself.

I have swelling one side, front of neck - dr put down to steroids. Didn't even look at it - just said come back if it gets hard. You will get all the right support here - I dread to think where I'd be now without it. X

Agree with all the other comments about you not being started on a high enough dose. 15mg for 4 weeks would have been more normal to have dealt with all the inflammation. Where are you braininjutythe pits? just the area.

Thank you all for your experiences and reassurances— what a kind and helpful community this is! Jackoh, I’m in London.

PMRpro
PMRproAmbassador

The spongy swelling is almost certainly fat deposits from the pred. You can help reduce the fat deposition by cutting carbs drastically - especially proced/white/simple carbs.

It's all very well using too low a dose of pred in the hope of avoiding side effects - but if it doesn't work well you are getting no benefits to balance out the downsides. The latest recommendations for management of PMR say that the starting dose should not be too low or too high - 10mg may be enough to deal with the ongoing daily inflammation being created but it hasn't cleared out the existing stuff and so the baseline is just bubbling away below the surface. Even a small reduction in dose results in the inflammation building up enough to cause symptoms - and for some reason they are then more difficult to get under control. And you won't get them under control if you don't use enough pred.

If I were in the London (UK I assume?) area, I'd be looking for the opportunity to organise a day trip to Chertsey to someone who does know what he's doing with PMR.

Thanks PMRpro, Chertsey isn’t too far away from me, I will look up what’s there, I presume you aren’t allowed to make recommendations on here?

I was put on 10 mg initially that did b****r all so I went back to Gp who went to 15 mg but I did go to 20 mg to try to tackle inflammation properly. I’ve got those fat pads too at base of neck- believe it’s the steroids doing that. You’re on the right site to access the best info🙂

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