Does anyone else find their RA much more problematical in this "lovely" weather we're having ?
I'm told so many times by friends how much better my RA must be in the heat . So Ive given up telling them how I feel , it would be churlish 😩 . Everything hurts ! Even my feet which have been fine for years , and my "good" knee .
I remember years ago when we were camping in Spain and my RA was relatively new . I was trying to hoik my feet up into a hand basin in the toilet block . The lady at the next door basin , grinned sympathetically , and asked if I had RA . She said that she did and that it was the heat "wot did it" . Ie make everyday movements difficult . As I had always loved the sun and had a Mediterranean type skin which tanned easily , I didn't really believe her .
Years later I've often thought back to that moment. Especially, in weather like this when , although I still love it 😀- the sun really doesn't like me . 🙃
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Snap !!! Double swelling. Swelling from RA swelling from heat . My whole body puffs up and mobility a nightmare. Love a cool crisp day .
I've just looked at your profile . I was the same age as you when I started RA - I'm 80 now. Although MTX and sulfasalazine have helped a lot in the past , I think I might need more help now . I'm sero-negative too but an additional biological has never been offered.
I’m allergic to sulfasalazine and Hydroxychloroqine so there was no other option. I’m sure NRAS did an article on Biologics and they are more available now definitely worth pursuing.
I'm seeing my rheumatologist at the end of the month , so I may well broach the subject . From past discussions, though , I had a feeling that money was a consideration and I probably wasn't "bad" enough .
Contact NRAS helpline they can help with how to approach your rheumatologist. Always be armed😉. We need to live to the best of our ability not just exist
The hot weather is my nemesis.I've just been shot down on a 'friends' WhatsApp group...my Australian friend posted saying how unseasonaly cool it is where she is, her and her husband were wearing warm clothing and drinking hot chocolate. I posted saying how unseasonaly hot it is Edinburgh....do you want to swap ? She laughed.
A third friend entered the conversation from London running down Edinburgh, the Scottish weather and we Scots need to brighten up 🤷♀️.
Roll on the winter....I love the temperatures, the dark skies, winter clothing, winter type foods, nature....and I just feel better. So yes I'm with you.
Yep - I'm seronegative . I thought that was the good one . Turns out not , as I've quite a lot of joint destruction and interestingly shaped hands .😬🥴😵💫
I was told from diagnosis ( 1989 ) that I was seronegative . Which was good , apparently, as I was unlikely to get joint destruction. Hmmm ! I've had a TKR , a TER , ulnar drift and crooked fingers .
The views on seronegative RA are changing, although some rheumatologist have a bit of catching up to do.
Some recent research would suggest that seronegative RA is actually more challenging as it often results in a diagnostic delay, treatment tends to be slower and not as aggressive as seropositive RA. Because many rheumatologist still rely on bloods as a marker for disease control much poor care and inappropriate treatment is given. Not to mention some people are not believed or thought to be depressed / not coping well.
That’s interesting. I’m séropositive & the heat is a nightmare — swelling & the pain. Sometimes I think it’s a lottery. What’s in the bag of pain, today?
I can't say that I'm noticeably more swollen but the pain is worse. This is my first summer with RA and not yet on specific treatment so not sure if it's just the increasing severity or the heat.
Summary conclusion: RA variables are positively correlated with the humidity of the microclimate at the patient's skin. High outdoor relative humidity is unfavorable, but has less influence when there are few barriers for water vapor, like clothes, and when air conditioning is used. High temperature is unfavorable since it increases absolute humidity, but beneficial as well, since it reduces the presence of barriers, and stimulates the use of air conditioning. The classic opinion, "Cold and wet is bad, warm and dry is good for RA patients," seems to be true only as far as humidity is concerned.
I've also read that barometric pressure plays a role in symptoms. I haven't read anything specifically about seronegative / positive and exacerbation of symptoms.
Hope you get help soon . We have had really hot spells before - especially, I recall , the first summer of lockdown. So could be that your RA was dormant . Who can tell but add it to your list of questions . Hope you get sorted . 👍
Thank you, I have a follow rheumatologist consultation in 10 days. I had a Kenalog jab at first one (2 weeks ago) but while it's helped with stiffness in some joints, it's not helped with pain.
Unfortunately, none of the corticosteroid jabs I've had in joints have worked . Although , for some people they've been a godsend and worked for years . I was hauled into hospital once when I was struggling for "pulse therapy" . This worked for a couple of hours . Just luck I guess if treatment works . Although I must admit I've been reasonably lucky with treatment. Unfortunately, I think as you get older you have to contend with your body aging as well .
This fierce heat is definitely ‘wot does it’ for my body. Even parts that don’t normally bother me and that I know I’ve not ‘done anything to’ suddenly make themselves known. Even though I wouldn’t say I’ve actually let myself get overheated. It’s very weird really. One thing is for sure - this level of heat probably won’t last - then I know I’ll miss it.
Yup same here, can’t get my shoes on this afternoon and had to resort to the codeine to get out to do the pm school run. Having said that though, my Raynauds doesn’t like it too cold either, so I have a very narrow acceptable temperature range!
Yes always.it’s a different arthritis but they think it’s all the same don’t they.Yesterday in all the heat I felt so ill.I have fibromyalgia too so pain was horrendous.Sitting or laying was unbearable so I was exhausted pacing about then flopping for few minutes.Hope it’s cooler today 😫
I'm struggling with my joints in this heat and I have erthmelegia (prob not spelt correctly) burning hands basically and swollen. osteoarthritis, planter palma psoriasis and been referred to rhemotology ...........it's unbearable😩😓🌞
I was diagnosed with seropositive RA in Summer 2020 and agree, when the weather turns hot my symptoms worsen. I much prefer Spring weather now and can’t cope that well anymore with heat!
I have ankylosing spondylitis, and struggle with the heat. I find my joints ache and swell more, I have peripheral as well as spinal symptoms. I normally have slim ankles, but the last few days I’ve developed massive “cankles”, where I have no definition of an ankle due to the swelling, and my foot is so swollen I’m struggling to find shoes to wear. It doesn’t help that I have adrenal insufficiency, and have no tolerance to heat. I get very nauseous, lightheaded and exhausted with the heat. I have to take extra steroids to stabilise things and drink electrolyte drinks to replace the salts. The worst part is the head and face sweats, I can be drying my hair 5-6 times through the day. I wear hearing aids so have to dry my hair, so the aids don’t get damaged. I’m self conscious when out, because people assume when the sweats lashing off your face and hair, that you have a fever, or potentially Covid. So I avoid places with no shade or air conditioning. I have fans in every room, as well as a rechargeable that I take into the garden. I also use cooling towels which are great. Role on Autumn and Winter 🤪.
I’m certain it’s worse here in Britain because of the humidity, in drier countries I tolerate the heat better.
Sorry to hear you're suffering so badly . I agree with your last statement re humidity . There's nowhere for the heat from our bodies to escape to . Another factor is that we're just not used to weather like this here in the UK . 😕 Also , when the weather changes , as inevitably it will , I just know I'll look longingly back at these few days of unseasonably hot weather .
Ah yes, the heat must be so good for your joints, have you thought about going abroad for winters 😡🤬. All my joints swell up in the heat & are so painful. Have given up trying to tell folk that.
I also used to love the sun & had a property abroad now it’s my enemy.
I’m exactly the same. All through my childhood and actually until just after I was diagnosed in 2004 I loved being out in the sun. I too have a Mediterranean skin type, and brown easily. My tolerance to extreme heat has decreased, and this hot spell has left me a hot, swollen mess. I’ve got up this morning to grey skies and I’m inwardly cheering and hoping the sun wont shine, just for a bit of relief.
I dread the hot weather! Hands & feet so sore & swollen, now have nodules on pretty much all fingers & toes, which is making it so difficult to do the thingsI love, ( crochet &baking) we have also just adopted a beautiful little rescue dog, she has had such a hard life,but is so loving,having to get up at silly o’clock to walk her,but I can walk, will crochet, but might call time on the baking! Oh & the ironing. ( sorry for swearing) 😂
What a lovely little dog . Amazing how they can forget unkind human behaviour and give another human a chance to put it right . I'm sure she loves her walks with you - the baking ( ironing ) can wait . 😁
I wonder if hay fever is making the RA worse and whether you have any allergies. It does with me. It starts around Easter every year - every Easter I suddenly get pain above the knee which tends to go late summer. I also get flares in other areas - the hands (thumb joints, mid finger joints, wrists, upper arm muscles, shoulders. It calms down towards the end of the summer. I also notice that anti histamines relieve the pain and stiffness considerably.
I don't normally suffer from allergies at all . Although , I have had quite frequent bouts of sneezing . This being a possible sign of covid I've used up most of my LFTs , but so far so negative . I guess this could be a start of an allergy . 🤧 Something else to enjoy 😉
I did not suffer from hay fever until I was 60. Everybody in the office had the symptoms and we all thought we had bird flu. One woman went to the GP who said it was hayfever. That was the spring/summer of 2009, which was a bad year for pollen, and nobody in the office had ever had hay fever before - various ages 20s/60. Allergies can start in later life.
However, the easy way to find out is to try antihistamines for a few days and see if there is any improvement. It is logical really that anti histamines would help RA as both allergic reactions and RA are inflammatory conditions. I did mention it to the rheumatology consultant in around 2015 and he just laughed at the idea that the swelling in my hands could be caused by histamine. He could not come up with an explanation as to what it was. I also mentioned that in July 2013 I was badly bitten by green gnats flying around Japanese knotweed. I had 30 bites on each leg, on my hands and shoulders. The bites did not go down for nearly a year (around May). In July 2014 I developed RA overnight and it was severe. I wanted to know if this was the cause of the RA and he said it is possible to find out privately but not on the NHS. I feel I almost know the answer.
Anyway, anti histamines are so easy to take that I think it worth a try. I use Fenofexadine which has recently come off prescription and has no side effects whatsoever. I did not find Loratine strong enough. Sneezing is caused by hay fever and not much else. Whichever you choose, make sure it is non-drowsy.
Thank you so much for the information about fexofenadine. I used to get prescribed telfast years ago by my GP and they were great but in recent years the antihistamines I’ve been buying just don’t cut it. I’ve just bought an alternative fexofenadine and will see if they help with swelling too. Worth a try and I know from past experience I’m ok with them. Brilliant bit of info because I know I’d be wasting my time with GP.
Fexofenadine comes in two strengths - 120 mg (over the counter) and 180 mg (can be bought on line). An allergy clinic told me to take 120 mg twice per day but I found one 180 mg more effective. You need to take it just before the pollen count is high - around 11 am/noon.
I find the trouble with all tablets is that the body gets used to them. I was advised to take Fexofenadine all year round but I find it more effective if I have a break and then resume.
Good advice I think I will take it slow with 120mg once a day and see how I tolerate it if I don’t have any issues I will then buy 180mg as it’s not the same brand I used to have and you never know with these things. So glad I saw your post though 🤞
Finally people who the get the havoc heat causes my RA. The sun makes my skin act up due to many allergic reactions to RA drugs. The only way I can tolerate Benapali injections is to take 540mg of an antihistamine called fexo fenadine. The swelling joints and pain are enough to make me go mad.
Thank you for posting this thread as finally I am not alone with the Heat.
This thread is so interesting. I've always swelled like a beast in the summer. Inches everywhere. Even my jeans get tight. I have been told by a doctor it's not a thing. He looked down his nose at me like I was talking twoddle. Well it obvious is. Lol. I always struggle just in the warmth of a hospital. Personally, from travelling to other countries, I think its the humidity plus heat that does it. Once it rans its like someone has stopped squeezing me.
I've always been uncomfortable in heat, always preferring cooler climates.I went through a stage in my late 40s of having profuse facial sweating every morning, which only settled a few hours after I was up and moving.
My GP didn't believe, or wasn't interested in how disturbing and difficult it was to manage when working, presenting face to face with large groups of people. I couldn't wear any make up and my hair would be wet with sweat too. I often looked a mess. I got the usual .... menopause....but I had a very menopause ... I was well out of it. The facial sweating just stopped, then I got RA.
My own rheumatologist said she had never heard of people with RA not liking the heat or being hot and disturbed overnight with disrupted sleep....thankfully now retired.
Isn't wonderful to have a forum such as this where others not only share your symptoms, but believe you ?
Yes I’m the same! My bones definitely don’t like this heat! Swollen fingers again. Knees and right hip hurts. Told hubby I need an air conditioner but he’s worried about the energy bills. 🤦♀️
I’m also worse if the humidity is high, the rheumy nurse agreed that high humidity does cause a flare. June was awful for me & rheumatology agreed to give me a month of steroids they worked really well, but a week after they finished it was back to the flares!
That's interesting , that you've been given steroids for the humidity . Another addition for my notebook and next week's meeting. I have gone back to one naproxen a day - just for the last couple of days . This has really helped
It’s the humidity that seems to cause a flare with me, it was in the mid 90’s in May/ June, also had the same in November last year when it was cold but the humidity was high. Know it’s weird, but several people I have seen are saying the same,including the rheumy nurse I see!
I think this is the problem with RA. Although there are many features about the disease that we all react to , there are also many factors that make it a purely individual disease . This is why no one medication or approach suits us all .
For me it's usually when the weather changes from dry to wet, but I know a few people who find the cold comes as a relief.I had got used to not being able to use my left hand with only limited pain in my right but a couple of months ago my right hand started to feel as if it had been stamped on, fingers forced back type feeling. I've got a spinal injury so need my hands arm to suport my back.
I've been taking creatine monohydrate, from the NHS patient news letter and fitting in with resutch I've been doing about improving your general health and Immune system to combat RA. So far I've got no pain in my right hand at all and use of my left hand back. I can even move my trigger thumb again ( mostly without pain) it had been locked since November ish.
As an experiment I've given some to a friend who has quite advanced MS Diabetes and ra. He was struggling terribly a couple of weeks ago. Exhausted in pain with little movement in his legs. After 2 days he asked me to order him some much less pain and moving around to the point where he hurt his back.
Always do your own research if in dought talk to your doctor. It's certainly something to consider as a treatment even if its branded as an exercise enhancement.
If you are interested in trying creatine monohydrate, and you have done your own research and are confident it wont interfear with any medications you are on. Follow the instructions and listern to your body itll tell you if you need less. I'm taking half the recommended dose, my friend is only taking a 3rd of a dose.
Be interesting to hear background anyone who's trident this or is thinking of trying it.
I look at it differently, if it works it works regardless of where it comes from. Doctors can only Prescribe Pharmaceutical drugs. This limits them.Creatine monohydrate is a Recognised supplement. That does improve Performance when training.
Just to make the point again, the information about creatine monohydrate came from the NHS Patient access email. So it safe not a backstreet Hooker's poker treatment. You can buy it on amazon or Hollandon Barrett on the high street.
Their are many house hold products that are as good if not more effective at treatment (smome) ailments than the official prescribed. Being stuck in bed at times I've found mouth wash more effective for treating bed sores than any if the hugely expensive creams I've been proscribed.
My attitude is as long as its safe to take I'll try it, if it helps then great if not nothing lost. That's why I make a point of saying do your own research if considered talk to your doctor. That is if you are lucky enough to get to see one lol
Anything above 18 and my temperature debates spiking. Yesterday and today it's been hovering between 37.9 and 38.2. Get to 38.3 and I'm likely to vomit. I am allowed (!) to vomit once then find myself in hospital for three days - adrenal insufficiency, not a drop of cortisol or ACTH to be seen (not due to pred, my rheumy won't prescribe it). And yes, i am also sero-negative. Sitting here with huge feet and hands . . . plus knees. Oh joy.Definitely prefer winter, even with Reynauds.
Cold I get my Raynauds issues too hot all hell breaks loose. About 18deg and I am normally ok apart from the normal hellish sweats that attack me when am not expecting them.
I was told when I was first diagnosed about 15 years ago I was seropositive but apparently I’m seronegative now haha. I’ve always had extremely swollen legs and feet every summer since I was first pregnant with my daughter 32 years ago. RA wasn’t a thing then but when it developed I found I could throw my walking stick in my case after a few days in the sun. Not anymore boy do I hate it swelling pain and no footwear for me. I never sit in the sun regardless of the temperature but I’d say about 21* with a cool breeze suits me. Really hate the cold too so I moan lol whatever the weather. Don’t know if others are the same but I definitely know if it’s going to rain without a forecast telling me.
Hi I actually find the heat is better for me, We moved to Spain about 17 years ago to live because the climate helps me. I find the cold and particularly the damp much worse. Only had RA since 2014, but had many problems with my back before that. But maybe it’s because we are set up for the heat hear, aircon and ceiling fans, plenty of shade.
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Hi my name is Jan, 55 years old and diagnosed with RA in August.
A visit to my new gp (old one retired- 'scuse the pun😁)
my 15yr old daughter 
Starting to feel like my old self
Much needed sunshine.😎
