2nd appointment with consultant & the goalposts seem to have shifted!

As I said in my 1st, rather anxious Post on this forum just over a week ago, I was pretty apprehensive about my 2nd appointment with the consultant today.

At my first appointment the Rheumatologist would not listen when I tried to tell her my PMR history. So this time I took a printed sheet & asked her to read it first. She then examined me.

Now she no longer thinks that I have Rheumatoid Arthritis, (test results all negative), but says maybe I have got Fibromyalgia on top of the PMR!

She says that the pain I have in my hands & feet can't be PMR. PMR is stiffness & pain in shoulders & hips only, apparently, according to her!

Please does anyone have a link to the study done by the Leeds Research team, often mentioned on this forum, that says that PMR can involve feet & hands? I can't seem to track it down & I clearly need to give a copy of it to her.

She also says that the pain I have in my calves can't be from PMR. Anyone else out there have painful calves & shins?

It may well be that I have got Fibromyalgia as well as the blasted PMR, (God help me) but honestly it doesn't give me a lot of faith when these consultants are so sure that they know it all & yet we know that they are often mistaken. She's trying to help, but it's making my already extremely difficult life even harder.

On the plus side, she is referring me to an endocrinologist, which I think is a good idea. She says my rapid 4 week deterioration when she asked me to drop from 15mg Prednisolone to 12.5mg on alternate days, can't be the PMR alone. I appreciate that most of you would probably disagree with her on this too, but hey, I think getting my cortisol levels checked could be useful right now.

Also on the plus side, at least I'm not having to fend off her offers of Methotrexate or other DMARDS any more, although she has already offered me Amitriptyline for the possible Fibromyalgia! Personally I would like to pin down where exactly my body is going wrong before adding yet more drugs to the mix.

Any further advice would be much appreciated, also if anyone has any more info about the Leeds Research into hands & feet & PMR, that would be really helpful.

Thank you all.

Sarah

[Hidden]

It's all complicated isn't it determining which pain goes where. Don't know where you can find research but is it a Sarah Mackie project in Leeds?

I have had fibro for a good 15years and PMR for 2yrs DX. Did rheumy check trigger points? I have had pain just about anywhere at various points. Pain killers will help fibro pain as will amitrypiline. The thing with the pain killers is that you have to build them up to a level in your system for a while at least. It's no good thinking my legs hurt here's codeine and or paracetamol. Build it up for a week and see if pain subsides. Then wean down a dose a day and see what happens. I am sure others will be along to help.

[GOOD_GRIEF]

Hi Sarah:

Last summer (all 3 months) I has very painful calves due to Achilles tendon stiffness, a flare brought on by attempting to reduce pred too much and too fast. I went back up to 20 mg for the duration until it eased in September, then dropped by 0.5 to 1 mg every couple of weeks until now I am down to 9 mg. Once I took control of my taper, I had no flares and pain and discomfort has been at a minimum. (Except for the month of March here in NYC, where we had a significant snow storm every week, making for tough commuting conditions for me.)

[aladymo]

I have severe pain in my calf and shin. Can barely walk. 😢 Rheumatologist told me it was not PMR related. He wants me to see a vascular dr. I spoke to my GP and he will send in a referral. Now I wait ( could be a long wait I’m told 😱). I have heel pain today.

[karools16 in reply to aladymo]

Think it's a good idea referral to a vascular dr. Sounds as if you may have claudication.I had it, many years ago..pain in calf and shin, and unable to take the next step, unbearble pain. Hope you soon pain-free.

[GOOD_GRIEF]

Lots of us with PMR have pain and swelling in our hands and feet. I had it for about a year in varying degrees, and sometimes still do if the weather is bad enough. It's not the joints that hurt. It's the flesh between the joints.

Once I pointed out where it hurt, and once I showed her that the reason I couldn't close my fists was because the flesh between my joints was swollen, not the joints themselves, she caught on.

But let me tell you, we battled for months before I got her to admit that this was PMR, and not anything else.

[Hidden in reply to GOOD_GRIEF]

You describe it perfectly. I call it my sausage fingers. Not much to see but just can't make a fist.

[PMRnewbie2017]

Hi. The first question I have for you is, are you taking any other meds?

I had calf pain which also spread to the arches of my feet and started about 5 mins into my daily dog walks. When I stopped Omeprazole the symptoms disappeared after about 2 days. I persuaded GP to prescribe Ranitidine instead. I didn't take it regularly but noticed that my calves would feel tight sometimes. I mentioned it to the Rheumy who said I have vascular claudication. However an in depth search of side effects revealed 1.6% of people got muscle pain with Histamine H2 antagonists. So I was one of the lucky ones!!! I stopped the Ranitidine and my legs and feet are fine, and my dog walks ( about an hour twice daily) are discomfort free. I was taking 12.5 mg prednisolone at that time.

There is no documented drug interaction for the above but my gut feel is that PMR/GCA makes us more sensitive to some of the less common side effects of many meds.

[Hidden in reply to PMRnewbie2017]

Once again thank you to everyone who has replied to my query. Really appreciated

Regarding the pain in my calves, the only medication I'm taking is the Prednisolone, Calcium with Vitamin D & Alendronic Acid. I did have a doppler test, as the circulation in my feet & hands is completely USELESS now & I suffer a lot of additional pain just from the extreme coldness of my feet. The result was borderline normal.

Please can anyone help me find the 'Leeds Research study' which is so often referred to on this forum, regarding PMR pain in hands & feet? I can't find any information about it & I need to be able to point my consultant at scientific info, in order to educate her so that she doesn't keep spreading her misinformed dogma that if there's pain in hands & feet it isn't PMR!

Thanks again all. It's really encouraging to get your support from around the world & yes, last summer was rubbish here in the UK too & the winter has been AWFUL!

[PMRpro Ambassador in reply to Hidden]

I don't know if it is published - sometimes they do work and may present it orally but don't write it up to submit to a journal.

However, you could ask her if she is familiar with RS3PE syndrome, which is often found alongside PMR and affects hands and feet. That may be the cause of hand and foot pain occuring in patients with PMR.

[Celebrant]

I have pain in my hands and wrists--it seems to be muscular and also in my calves. I think each person is different and I still think Fibro and PMR are catch alls for the doctors.

[Grants148]

Hi SoSarah,l think it would be a good idea for doctors and rheumatolgists to read the posts on this forum,they do seem to have differing views on PMR and fibromyalgia.l was diagnosed with PMR very quickly so my doctor was well informed,l had pain and stiffness in my legs as well as hips shoulders and arms.

[Insight329]

academic.oup.com/rheumatolo...

Is this the report you asked about? If not, pull up my posts to look for the one that starts with Websites. I’ve been keeping a list of articles snd it might be in there.

healthunlocked.com/pmrgcauk...

[Insight329 in reply to Insight329]

I quickly scanned the article and under the section of Overlap between GCA, PMR and inflammation, swelling of hands and feet are mentioned.

[Hidden in reply to Insight329]

This one is quite complex but is a Mackie paper on MRI and pred. It doesn't elaborate on PMR and feet but at least mentions feet and hands in addition to legs arms and shoulders. If it's for a Dr to read it might help. I can't really access much on a phone but you could try what they call citation index and put Sarah Mackie and PMR in and that will lead you to other articles that refer to her work so there could be a more accessible reference to feet and PMR.

ncbi.nlm.nih.gov/pmc/articl...

[Hidden in reply to Insight329]

Sorry insight329 that was supposed to be for sosarah. I presume she will get a notification. 😜

[Insight329 in reply to Hidden]

No problem!

[Insight329]

Here's a list of her publications. Hope it helps.

medhealth.leeds.ac.uk/profi...