Update to my 88 year old mum and swelling of hand and vein

[Chrisellie]

Further to “ my 88 year old mum” 

healthunlocked.com/pmrgcauk... doctor has left but did refer Mum to the rheumatology in the hospital . He confirmed PMR but said may be atypical .Reduction plan. Went to 25 pre seeing him and all symptoms went way. Then started on 22.5mg. Rheumy said for 5 days then 20 for 5 days then 17.5 for 5 days and 15 pthen 12.5. The 12.5 is for 4 weeks.We are on 15 mg at the moment. She had been ok with this but had swollen right hand with pins and needles on wakening, also slept an hour longer than usual and felt overly tired on getting up. She had breakfast and then fell asleep for an hour on her chair( this is unusual). She also said the vein in her neck was swollen, I asked about her temple but she said that was ok. All has worn off now but does this sound something to be concerned about or could it be too fast a reduction.Hoping you can help as I have only just been told about this.Many thanks

[PMR2011]

Hi Chrisellie, if she has PMR or worse GCA that is a pretty fast a taper. Generally allow 3-4 weeks between tapering to know if symptoms will return on the lower dose. Fatigue goes hand in hand with these autoimmune diseases, especially during early stage. She’s lucky to have you advocating for her!

[Chrisellie in reply to PMR2011]

Thanks. Do you know anything about swelling and pins and needles?

[DorsetLady PMRGCAuk volunteer]

Would say too fast… can understand Rheumy wanted her back down to PMR ranges - but to be honest only 5 days at each dose is fraught with danger… 3-4 weeks required.

As she now at 15mg - no more reducing until her current issues have resolved - and she really needs to start the 4 week at each dose now - not when she gets to 10mg. ..and preferably 1mg steps, but that be difficult to persuade doctors..

[Chrisellie in reply to DorsetLady]

Thanks. Do you think the swelling etc is related to speed?

[DorsetLady PMRGCAuk volunteer in reply to Chrisellie]

Yes -she may have gone below the dose her PMR needs- just seen this - which a lot of doctors don’t always appreciate-

“Other symptoms can happen, such as: Swelling of the hands, wrists, feet, and ankles. Numbness, tingling, or pain in the hand, wrist, or forearm.”

If you can keep her at 15mg for a few weeks they may reduce -if not then you need to tell Rheumy ,

But as PMRpro says could be other things…

[Chrisellie in reply to DorsetLady]

Thank you sounds like a plan.

[ChinaWuntoo in reply to DorsetLady]

Where can I find your quote, please?

(for DorsetLady)

[DorsetLady PMRGCAuk volunteer in reply to ChinaWuntoo]

This is one link -

myhealth.ucsd.edu/Search/3,...

and another-

saintlukeskc.org/health-lib...

[ChinaWuntoo in reply to DorsetLady]

Many thanks. I will read carefully and hold it in reserve if all my tests for RA come back negative!

[ChinaWuntoo in reply to DorsetLady]

Thanks again. I'm not impressed as I cannot see where this information came from. I don't remember swelling of hands being mentioned by the known experts. So I'll not press the fact with my GP!

But thanks for the link.

[PMRpro Ambassador in reply to ChinaWuntoo]

RS4PE sybdrome can be associated with PMR and can recur as well as being there at the start. When it recurs it is a sign to look for other underlying conditions that can cause PMR, including some forms of cancer including myeloma. Sorry to be depressing - but it should be looked at.

[DorsetLady PMRGCAuk volunteer in reply to ChinaWuntoo]

I'm not impressed as I cannot see where this information came from. I don't remember swelling of hands being mentioned by the known experts.

What do you mean you’re not impressed? And what known experts?

Another link from NICE which includes same info - under additional features.

cks.nice.org.uk/topics/poly...

[ChinaWuntoo in reply to DorsetLady]

I look for recognised sources, people and material, being referenced or quoted in and supporting an article. Those two (one?) articles don't appear to me to be authoritative. I could be wrong, of course. Whereas the NICE article comes from a reliable source and Dasgupta and others are referenced which is good enough for me. I'd be happy to quote the NICE article to my GP if it seems appropriate but not the other one.

[PMRpro Ambassador]

I think the taper is too fast - why are they in such a hurry? And I swear - to listen to some doctors more than half of patients with PMR are atypical!!!

Looking at her story, she needed 25mg until the symptoms were under control and only then should they have reduced - and she needs 20mg etc for a lot more than 5 days - her body doesn't know where it is. She now needs to stay at 15mg since that is where you are.

GP? That arm could be carpal tunnel or RS3PE syndrome but difficult to tell. Could she have lain awkwardly on it? The sleepiness could be her body trying to heal itself. But she is 88 - the whole thing is hard work at that age.

[Chrisellie in reply to PMRpro]

Thank you. It is possible she laid on it awkwardly. She was worried. Her vein in her neck was very raised as well and that concerned her more. Could it be all related? I will keep her on 15 for the next 4 weeks, I really should have know better myself..

[PMRpro Ambassador in reply to Chrisellie]

Vein or artery? There is a pulse in an artery

[Chrisellie in reply to PMRpro]

I didn’t see it unfortunately. She said vein.

[PMRpro Ambassador in reply to Chrisellie]

Most people don't know the difference ... But veins don't develop GCA< ony arteries

[piglette]

Your mother has a life changing illness. The steroids do work wonders with the pain only provided she ensures that her dose it not to slow. The steroids just help the pain, they do NOT cure the disease, your mother will still have all the symptoms of PMR such as fatigue. Normally people reduce monthly, it needs to be taken slowly.