Hi there,
Still awaiting diagnosis but finally have an appointment at the early arthritis clinic next week. Plus awaiting results for anti-CCP, RF positive.
My hands are getting worse, both swollen & feeling weak, sometimes finger pains. Naproxen doesn’t seem to be helping.
Anyone else had this early on, feels like my hands are going to lose function 😟. Have some gloves on order.
Yes my hands were awful in the beginning. I used cold packs and support gloves and painkillers.
I'm sure you will get help next week but take photos of your swollen hands and joints now that you can send them as its often the case that they get better before an appointment !!!
Hi, I have Rheumatoid arthritis. I also get really bad hand and fingers pains which also are swollen. This happened a lot at the earlier stages too. I found running it or soaking hands under hot/warm water helps a lot.
Yes, my hands were so sore and puffy in the beginning too. Ice packs and wrist supports helped.
Try not to worry, once you can get the right medication they will improve, unfortunately it is really difficult in the beginning. Best wishes
Hi Sunnyseas. Yes I did. It was how mine started. They swelled up so badly (luckily I removed my wedding ring before it was too bad otherwise I would have had to have it cut off). The GP made what she called a three week appointment for me but it was more like 4-5 weeks as they were so busy. I can take quite a bit of pain but this was something else. I couldn't lift the latch on the doors - I used to have to call my husband to open them for me and I couldn't turn the taps on and off in the bathroom so he had to change the tap heads to lever heads. I couldn't wrap a towel around me, clean my teeth (had to get an electric t-brush) or dress myself etc etc. You couldn't see any of the joints on my fingers or wrists as they were so badly swollen. When the Rheumy doctor did the ultra sound on them, he told my husband he had never seen anything like it. I had shooting pains going through my wrists and fingers, it was horrendous. I really feel for you. I can't take anti-inflammatories because I have a very sensitive stomach but I did find that Paracetamol helped, it didn't take all the pain away but it did help me to sleep. I hope next week comes round really quick for you. All the best. xx
Hi springcross, thanks so much for sharing your experience, that must have been a tough time for you. I hope you are better controlled now and things never get that bad again for you. Take care, ss
Yes it was a tough time, probably because it took so long to see the Rheumy doctor - I'd had it for about three weeks before I saw the GP (I had injured my hand and thought it was all to do with that, until the other hand started to swell too and that's when I consulted the GP). I am better controlled now thanks but it was an experience I won't ever forget and I hope I never get a flare as bad as that. All the best. xx
Reading your description really brought back just how dreadful the first few months/years of RA can be. I had put it out of my mind......a real wake up call to look back.
Thank goodness for all the modern drugs we have today that usually mean people can get relief much sooner, & go on to live maybe a different but very good life.
Yes, I live in fear that it might happen that bad if I get a flare. I think there's talk of me maybe coming off of MTX because of my hair loss (I am not sure about that - I am waiting to hear what the Rheumy doc says after speaking to the nurse Friday afternoon). It's doing the job quite well but I can't carry on like this, I'll be bald soon if I do - such a shame.
I don’t honestly know if hair loss settles with Mtx. I was on it for 7 yrs...I have baby fine hair & I did wonder if it would be a problem ..but I think it might have thinned a bit... but then I had no trouble at all.
But It does get scary......when you think you might have to change a drug that is basically suiting you. I have tried a couple of times to go longer between Rtx infusions than 6 months. Both times within weeks....my hands, wrists & ankles have started playing up.
I’ m due an infusion next month & so far it’s still on track.
But in these times who knows? I really don’t want to try anything else....as if I get it every 6 months I’m fine.
Hope you rheumy has some ideas to help.
Many thanks. I was fine on 15 mg even with the hair loss side effect of Amlodipine - I don't think I lost a hair in seven months but then it was all changed and so the problems started. I really don't want to change as I'm afraid of "that flare" but I'm also worried because some of the others will be bad for me too - my weaknesses are lungs with COPD (don't want sinus or chest infections) and ultra sensitive stomach and, of course, my hair. Goodness, it's so frustrating isn't it!!!!! Did you have problems with MTX after seven years?
Is Amlodipine known to cause hair loss ? I have been on it for 15 years & not lost any hair,,,,,& with my fine hair .....every strand counts!
Yes, definitely, it's under the uncommon side effects on the leaflet and apparently, all the calcium channel blockers are the same. I've read countless comments on several forums about the same thing. You are so lucky, I have fine hair too so I know what you mean about every strand counts. The CCBs are not the only ones that cause it, there are other groups too. My nurse/practitioner said there aren't many that don't cause hair loss. At the end of the day, what suits one may not suit someone else - we are all different. I have a sister who takes Ramipril (which I loathe) and Amlodipine. The only side effect we share is with the Amlodipine - she has swollen ankles and I have swollen ankles, heels and feet (but only from late afternoon onwards as when I get up in the morning, they're OK) and lower legs. She doesn't get any SEs from Ramipril but I get several. Oh to have normal BP without drugs!
I agree...I have been on BP meds since I was 40! All female members on maternal side of my family had high BP, but if course ‘way back then’ you didn’t have check ups ...my mother didn’t get diagnosed until she was in her 70’s....luckily I had regular Medicals for my job ..so was diagnosed asap.
Does your sister have the”Pril” cough from Ramipril? I was getting so fed up with what I regarded as “clearing my throat” when a doctor friend In the US asked how long I’d had it.....I was on Lisinopril ....& he said the cough would go if I swapped to a different BP med.....so changed to Amlodipine et voilà no dry throat!
I found after 7 years Mtx just stopped working & side effects my rheumy found unacceptable mean I came off it.
I do hope your rheumy has some answers...life is so much easier...even with the odd flare.....once you are settled on meds that suit you.
No, she doesn't have the "Pril" cough but my S-i-L does (she's another one who gets on OK with Ramipril) by the way, under Amlodipine uncommon side effects is listed "cough".
Our high BP comes from my Dad's side (he died in 1972). I'm not sure that there was any actual BP meds available then and if there was, he certainly wasn't on any. His GP told him to keep exercising as much as possible in order to keep his BP down. My Dad's face was so red that from a short distance his face looked like a freshly boiled lobster. One of my sisters who died late 2018 had high BP for a number of years and whatever she was given made very little difference to her BP. I'm like that too with most meds but Amlodipine works best for me (with aforementione side effects).
I hope the rheumy doc comes up with a solution for my hair (and my tiredness) but I am quite nervous as to what that may be. Many thanks.
I seem to remember BetaBlockers we’re used by Cardiologists in the 1960’s...but probably not by GPs.
I think now people are more likely to be referred to a Consultant if BP is uncontrolled.
At a particularly stressful period in my life my GP threw up his hands & sent me to a cardiologist...I complained loud & long that I ate healthily, didn’t smoke etc ...the cardiologist smiled & said the only way to control your BP is with drugs,& I know what is available,& what will suit you. He was right & Amlodipine has kept me on the straight & narrow ....so far!
Hope your rheumy comes up with something to help the hair.
As Hilary Clinton said to young women University students in the US embarking on careers “Hair Matters”!
I so agree with that. 😁
Didn’t do her much good though did it?
No, but she still has "that" hair - (I expect it's a wig) 😁. I keep saying to my hubby when we're watching tele "look at all that hair she has" (no-one in particular) and he says "don't worry, it's a wig". 😁😁
When I was working as cabin crew we often wore wigs.
It beat getting up at 3am in some God forsaken hotel with dodgy electrics to wash & dry your hair. You could also swap hair colour half way through the flight! That really befuddled the passengers.
I must say if my hairdresser doesn’t open soon...I will be on line looking at wigs.....long wispy locks is not a good look on oldies!
😁😁 I might have to cancel mine as I am fast running out of hair to be cut.
Where do you live....can I have your appointment ???🤯🤯🤯
I was joking! It's not been made yet, probably in a month or six weeks. I'm in no hurry to go out yet!
I am going out with care.....I only have my hair cut at the hairdresser as I can’t sit at the backwash..so a quick15 minutes & I will be presentable!
I won't be rushing to mine, it's not the best hairdressers I have ever used but cheap and cheerful (mostly!). x
Yes my hands were so swollen I couldn’t grip a bottle of water to drink I had to use 2 hands bottle squeezed between palms to drink. I found hot weather made it so much worse. Some relief with hands soaked in ice cold water. Remember the pain and worry so well but it will improve once your meds work. You may get lucky at your appointment and they can give you a steroid injection 🤞
Aww Sunnyseas I really feel for you waiting to be seen. My hands and feet are worse affected too. I use a combination of things including heat and cold packs, the support gloves and painkillers.
Hopefully once you have your appointment next week a plan can be made with you to reduce your swelling and pain. x
I'm sorry to hear about your hands. Mine were similar (also my feet) and my GP gave me steroids while I waited for an appointment with a rheumy. They helped straight away but of course they can only be used in the short term. The rheumy prescribed methotrexate and hydroxychloroquine and I tapered off the steroids. Good luck with your appointment next week.
Leflunomide pain getting worse
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