Is GCA affected by hot weather?

[FnF36]

Morning everyone. I would appreciate thoughts and wisdom about a question that has arisen because of the hot weather.

I was diagnosed with GCA in November 2019. Beginning with 40mg Prednisolone >60>50>40>30>25 since March and have been content to remain at this dosage. Since the hot weather began early in May and worsening as the month progressed, I have experienced aching arms, wrists, hands and fingers, shoulder blades and upper back, and sometimes my legs. The aching is present at night as well as during the day and varies in intensity. I have also become increasingly fatigued each day.

I have not experienced any return of GCA symptoms - headaches, etc - and because of being shielded I have not had any recent blood tests.

So my question is, could or does hot weather exacerbate GCA and if so, given my pred regime, should I be considering an increase? Or should I consider moving to a more sympathetic climate!

Thanks in anticipation and wishing everyone wellness and safety.

[SheffieldJane]

It occurs to me that your reduction of steroid appears to be steep and fast. Have you really been going down 10 mgs at a time? My personal view is that this has been too fast to contain the GCA inflammation which has now built up a head of steam again and you are possibly in a flare. I am finding drops of 5 mgs too steep and will return to 2.5 mgs. ( GCA)

I think that if it was raining you might be asking the same question about the impact of the weather. I think it is coincidental.

I have been unusually troubled by hay fever symptoms, but I don’t think that sounds like the case for you. I am not sure of the impact of your other co- morbidities either.

I would discuss with my doctor, a return to the last dose that I felt well at ( maybe even 5 mgs above that for about 10 days). and proceed from there using one of the pinned tapering methods on the site, going down by 2.5mgs until you reach 10 mgs maybe and then dropping by 1 mg or even 0.5 mgs. Get a good pill cutter. Good luck. This is a long haul I fear.

[FnF36 in reply to SheffieldJane]

Thank you, appreciated and your comments make perfect sense.

Yes, the reduction was by 10mg. I have resisted a further reduction from 25 because I thought I needed longer at that dose given the reduction from November to March and based upon the comments on this site.

Although I have read and spoken about flares, I didn’t really know how they would manifest themselves to me. But your explanation covers that perfectly.

After the shock of diagnosis and coming to terms with my conditions, I eventually recognised there was no quick fix. It’s just the suddenness and impact of how I feel now that surprised me.

Thanks again, keep well and safe.

[DorsetLady PMRGCAuk volunteer]

Agree with Jane, more likely to be too little Pred rather than hot weather....although that may depend on what you’ve been doing in it!

Most people find cold wet weather makes them feel worse, and warm weather better.

The symptoms you refer to might not be the original GCA symptoms encountered, but they do sound very common on here. Your fatigue is also probably related to your diabetes.

I think you need to increase your dose for a while and see if that makes any difference - and then reduce more slowly. 2,5mg rather than 5mg a time.

[FnF36 in reply to DorsetLady]

Thank you, appreciated. Because my fatigue had been behaving itself and my still being a newbie to diabetes, I hadn’t even considered that may have a part to play!

All things being considered, I think an increase with a much slower reduction is the next step. At least I can discount moving! And continue to enjoy the sun in the garden.

Thanks again, keep well and safe.

[SnazzyD]

I’ve never had problems with exacerbation in hot weather, even Rome at 40C in my first year. It does however make fluid retention worse. Just because your symptoms aren’t headaches doesn’t mean that autoimmune inflammation isn’t building up into a PMR type picture. Did you go on to an ultra low carbohydrate diet before the diabetes struck? This diet nearly always prevents weight gain and diabetes by controlling the blood sugar. Also, high blood sugar can fan the flames of inflammation. Have you had a blood sugar test done recently eg HBA1c, or if not, a run of finger prick tests through the day if you can’t get to the doc? Relying on inflammatory markers to see if there’s a problem is not as useful a diagnosis as symptoms. The tests are there as confirmation, not as an instruction as to whether you treat symptoms or not.

[FnF36 in reply to SnazzyD]

Thank you, appreciated. Until diabetes was diagnosed in January by way of HBA1c, I didn’t know I had it. Since then, I have adopted a low-carb diet and eliminated all sugar. I have not had a recent blood test and based upon comments on the site now recognise symptoms trump tests. That said, finger prick tests sound like a good idea so I will get going with those.

Thanks again, keep well and safe.

[SnazzyD in reply to FnF36]

Symptoms trumping tests refers to the inflammatory markers. Eliminating high blood sugar from the picture is good sense because if unchecked it can cause many problems, and as you found out initially it was silent. Alas, some of us need a practically no carb diet to keep sugar spikes down. At least a finger prick checker is something you can do at home, procured via the Internet. Bear in mind the reagent sticks are supplied in small numbers and these are the expensive bit and need to be reliably bought. I didn’t look to see if you are UK, but Boots is a reliable source. Also, in the UK you may be able to get it on prescription if they think your case requires it. My surgery used to be given machines free for patients by the companies because they knew that they would cash in on the reagent sticks later.

[FnF36 in reply to SnazzyD]

Package en route from Boots. Thanks again for the tip.

[SnazzyD in reply to FnF36]

Great. Follow the instructions to the letter.

[PMRpro Ambassador]

I wasn't going to join in as I have PMR - but unusual heat also makes me tired. But for me, excessive heat is above 30C. What I will say is that people in the UK have a tendency to rush out into the full sun as soon as it appears. "Mad dogs and Englishmen" (and women) is all too true! I think both the vasculitis and the pred tend to make us more sensitive to warm temperatures - they both create sweating episodes and they will trigger more easily when the weather is warm.

If I go out after 11am when the temerature is above about 22C and the sun is shining it is with a sunhat and seeking the shady side of the road. We do often sit on our balcony in the afternoon - it is in full sun from lunchtime until just before sunset. But once the air temperature is above about 22C it is often too warm in the sun and we pull a curtain across, we even use it to keep the rooms cooler. Being in the sun adds a good 10C to the actual temperature, more if the area is sheltered from wind or has concrete or paved surfaces to reflect the heat.

We air the house in the early morning, shutting the doors as soon as the internal and extenal temeratures equalise. Keeping the house relatively cool helps, when the afternoon temperatures rise I am indoors, with a fan running if necessary and feet up.

[Cally55]

I hate to disagree with the others but yes, I always feel awful when temperature gets above 25 c. I have had GCA PMR for more than 4 years and various specialists have said slow down the taper in hot weather. My husband who had PMR some years ago found the same!

[lilypmr]

Hi I was not going to get involved and muddy the waters , but I have also found an increase in stiffness and discomfort in hands , wrists , knees and shoulder blades lately .

It eventually wears off a little after a day of movement . I do not think it is related to reduction of prednisilone in my case , although i appreciate a steep reduction can cause problems

We have been in lockdown in Devon since march and i have always found any joint pain worse here .. but it is usually raining .... so strange to suffer in such good warm weather .

I was diagnosed with PMR back in June 2018. I tapered successfully from 20mgs down to 2mgs by December 2019 . When I reduced to 1mg in January I had a return of symptoms and put my dose up to 5mgs again.

I saw my consultant in March when feeling reasonably well and on 3mgs and he reassured me that I would be off the steroids by end of May and discharged me . But if anything it has been more up and down with joint pain . Now stuck on 2mgs and reluctant to increase dose again.

I had hoped warm summer weather would help me . So am surprised and wondering if it is still PMR? or is one left with joint pain as a result of once having the condition ...

[PMRpro Ambassador in reply to lilypmr]

I have fewer problems when it is actively raining than before the rain when it is on its way!!! Joint pain is not usually perceived as typical of PMR unless you are unlucky enough to develop synovitis. However - I think poor adrenal function can also result in aches and pain - maybe that hasn't caught up? There is also the factor - is your current pred dose absolutely on the cusp of what you need?

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

Look under Background.

But how can a rheumy forecast when anyone will be able to get off pred? Crystal balls to the fore again ...