R.A.Sufferer.: I have had R.A.for over 3years and... - NRAS

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R.A.Sufferer.

46 Replies

I have had R.A.for over 3years and it is getting progressively worse. I can't sleep for pain and getting up in morning it is at its worst ,mainly in my shoulders,arms, wrists and hands. M,y legs feel weak all the time which impairs my mobility and my breathing is poor and have to rest several times when doing household chores. I am constantly on a fairly high does of steroids which has made the skin on my forearms very thin so that the slightest rub on them brings up blood marks which take weeks to go I am constantly covered in these and they look very unsightly. It would be comforting to know if other members are suffering with the same things and can give some helpful advice.

I

46 Replies
MaryinFL profile image
MaryinFL

Hi. I am new here too and haven't had a chance to real all the past posts. I am sorry you're going through this. RA sucks. I was diagnosed last October. My symptoms came out of nowhere - like I was hit by a truck. I had trouble while on a hike and within days I was in constant pain. I was in agony sitting in a chair or laying in bed trying to sleep at night. That first flare up was just my arms - shoulders, elbows, wrists, knuckles (especially my thumbs). The pain was so intense I couldn't even hold a fork to feed myself. When I finally got to see a rheumatologist I was put on prednisone and methotrexate. At first the meds made all the difference. I was able to sleep again and a lot of function returned. So I was weaned off the prednisone. The symptoms started creeping back, affecting more joints and my lungs. I was prescribed an inhaler, and have an appointment with a pulmonologist. I saw an improvement with more meds but after 6 weeks on the new MTX dose, symptoms are coming back again... and my hair is falling out. This last week has been pretty rough. I have been very healthy my whole life, and avoided all meds and artificial substances. But now I am trying anything and everything that might help. (Which my adult, pro-pharmaceutical, children find rather amusing.) I have relief with Ibuprofin but don't want to make it a regular thing because I don't need liver or kidney damage. I limit myself to one dose a week. I also tried CBD lotions for my hands and knees. They work but not significantly better than Aspercreme. I also tried THC gummies - which do not seem to do much if I am at home but do numb me enough to help me cope with long car rides and shopping days which tend to increase my pain levels. I went dairy free, then to a plant based diet, and now I am sucking down liquid tumeric and curcumin. I'm in FL and we have a heated pool, so I spend a lot of time in the water exercising. I credit that exercise with keeping my joints flexible. I, too, am looking to others here to understand the disease and learn better ways to cope with the symptoms and side effects of meds.

in reply to MaryinFL

Thank you for your chat and for sharing your experience. Like you I was struck down instantly with it,I went to bed ok and woke in morning in so much pain . I was hospitalised that day and diagnosed with R.A. and because it came on suddenly it was already severe. Sadly they also found cancer in my left lung maybe brought on by R.A and I had half my lung removed.Like you I am on Predisolone and also Arthrotec, omeprozole.. and the strongest dose of paracetamol available I also have to use 2 types of inhalers and occasionally a nebuliser.

Dr has prescribed me morphine in various forms but I had to stop taking it as the effects were not good , plus because of my mobility I need to drive and you can not do so if taking it.

Because of the covid. pandemic over here I have not seen either of my specialists for 2.1/2 years so not very caring. I hope you are getting better follow ups from yours.

I expect like me you get so frustrated as can't do the simplest of tasks which normally I would have done easily. Also household chores take me twice as long because I have to keep sitting down to rest and get my breath back.

I hope you are getting support from family/friends and they understand your condition because so many have no idea of the damage it does to our bodies and simply think it's arthritis and we are making a fuss about it.

Please feel free to chat again as it's good to compare and get some reassurance that you are not the only one coping with this awful illness.

DelicateInput profile image
DelicateInput in reply to

Hi - I found Devils Claw relieved pain by about 70% which is recommended on the Arthritis UK website. Years ago, I used to take phenylanaline. It is a mild anti depressant but it takes the edge off severe pain - nothing striking.

in reply to DelicateInput

Thanks for that , I'm willing to try anything.

DelicateInput profile image
DelicateInput in reply to MaryinFL

Hi - Did you find the curcumin helped? I took it for a few weeks. I thought it helped a little but not greatly - I was not quite sure.

MaryinFL profile image
MaryinFL in reply to DelicateInput

I've only been taking it about a week. I will keep everyone informed of my progress.

diana16 profile image
diana16 in reply to MaryinFL

Hi I'm so sorry RA is horrible and very misunderstood. Hassle your rheumatologist to start you on biologics which have revolutionised my life, along with Prednisolone. I am now mainly painfree and feel so much better in myself.

in reply to diana16

Oh that's so good to hear. When I finally do get to see him I will ask if there is a better way forward and hopefully get some relief from pain and can finally get some sleep.

Helen-NRAS profile image
Helen-NRAS

Good afternoon. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Best wishes.

in reply to Helen-NRAS

Thanks for that info, it's good to know there is someone to talk to and to give advice etc.

Lolabridge profile image
Lolabridge

Don’t put up with this! You are suffering and your medication regime is not working effectively.Do contact your rheumatologist and ask for a review soon.

It could be useful to contact the NRAS helpline first so you know how to get your needs addressed quickly.

in reply to Lolabridge

Thanks for replying and empathising with my R.A. issues. My Dr has asked for a rheumatologist to review me but still waiting for an appointment. NRAS helpline is good advice so I will seriously think about giving them a call.

Lolabridge profile image
Lolabridge in reply to

Yes I urge you to contact NRAS tomorrow. They will advise you what to do now and how to go about it confidently.

Katie-Mag profile image
Katie-Mag in reply to

Please give NRAS a call, they give great advice - you’ve nothing to loose.

Good luck with pressing for the treatment you need.

helixhelix profile image
helixhelix

Completely echo Lolabridge. This is appalling and you must not put up with such poor treatment. Leaving you for over 2 years on steroids without having thoroughly investigated all other options leaves me speechless.

Yes it’s more complicated if you have had cancer, but you should be getting better treatment rather than being ignored. Many drugs aren’t suitable for you or carry bigger risks, but they should at least have discussed options.

Personally I would contact PALS at your hospital (patient advice and liaison service) and complain!

in reply to helixhelix

Thanks for your support and advice which I may persue.

DelicateInput profile image
DelicateInput in reply to helixhelix

Hi - Have a friend/neighbour who has RA. She was treated with methotrexate but developed breast cancer. She was then taken off methotrexate because of the cancer and was advised she could not take any RA drugs. The cancer is classed as incurable though it is slowing down and she has had it since 2014. It is a difficult situation.

in reply to DelicateInput

Oh dear what a terrible situation for her to be in, I wish her well. As you probably read I had lung cancer and this has complicated things especially as R.A. is affecting my lungs as well . I luckily have not been told to stop the treatment Im on so unlike your neighbour I am getting a little relief from pain.

DelicateInput profile image
DelicateInput in reply to

She is now 66 and cancer slows with age. It cannot be cured but it is not classed as "terminal" - to be terminal you are expected to die within a short given period, maybe 6/12 months. The hope is that it will continue to slow down. However, she cannot take any RA drugs and is suffering badly with the RA. Her knees are boggy and painful, and she has difficulty walking.

She herself suspects Methotrexate caused it. It is a puzzle though because Methotrexate used to be used to treat and cure cancer.

I do wonder why the NHS cannot abandon Methotrexate now that other drugs are available which do not have such bad side effects and are becoming much cheaper.

helixhelix profile image
helixhelix in reply to DelicateInput

Methotrexate is a great drug for many people. And biologics and other new drugs are not risk free in any way. Have you ever looked at the Black box warning for Rituximab? I class death as a pretty bad side -effect.

My mum had breast cancer, she died with it (not of it) at 96.

DelicateInput profile image
DelicateInput in reply to helixhelix

I was wondering why my friend had been told she could not take any RA drugs at all on account of the breast cancer.

Angjoplin profile image
Angjoplin in reply to helixhelix

I would like to second contacting PALS. I had to do this last year and low and behold I got an appointment in front of a rheumatologist in a matter of weeks. I know we don't like to complain but sometimes it has to be done.

in reply to Angjoplin

Thanks for that, I will certainly consider contacting them. Good to hear you got quick results from your complaint. Encouraging.

MaryinFL profile image
MaryinFL

Oh, lung cancer as well. I hope they caught it early. My father was 81 when he had a lobe removed due to lung cancer. They got it all, no other treatments for him. He even handled the surgery well.

Things were also backed up in the US due to the pandemic. I have a primary physician who put me on meloxicam, which did nothing. It took almost two months to get an appointment with a rheumatologist. Honestly she was not my first choice, but everyone else was booked up for 6 months or longer, and I was in agony. I didn't want to wait. It was a blessing in disguise because I truly love her. She sent me for extensive blood tests, and x-rays and CT scans of my joints. She is very knowledgable and explains the results and care plans thoroughly. She checks on me regularly and is always available if I have questions. I feel like I am in good hands with her care.

I have been the support system for my family. I raised my children, then took early retirement so I could care for parents and disabled relatives when they had terminal illnesses. Now the shoe is on the other foot. C'est la vie. Caring for them has helped me better cope with my own limitations and frustration at not being able to do the things that need doing. My husband is very sympthetic as he has osteoarthritis in his spine and knows all about arthritis pain. He's a wonderful husband. I could not ask for better. But he makes a really lousy wife. He doesn't see dirt, or the hamper piling to the ceiling, and his idea of cooking is Chinese takeout. So I keep my eyeglasses off so I don't see the dirt either, buy lots of new clothes, and have him pick up a bagged salad for me along with his Gen Tso's. ;)

in reply to MaryinFL

Nice to hear from you again . Yes luckily they did manage to remove all the cancer in 2019, I am supposed to be regularly checked for 5years after this to make sure I'm still clear but of course with covid. I have only seen the specialist that deals with this once so just hope I'm still clear. Sounds as though you have struck gold with your rheumatologist and I hope she continues to do her best for you. Mine is also quite nice but trying to see him is like trying to pull hens teeth.

I like you have raised a family. I sadly lost my parents quite

young in life and have been a widow for 22 years. Sorry to hear your husband also suffers but it seems you muddle along together very well and can see the funny side of life.

At least R.A can't take away our sense of humour. Take care and keep fighting .

Neonkittie17 profile image
Neonkittie17

Hi Minstrel, Are you on an RA medication? Sounds awful you are suffering so much and there must be something better the rheumy can do than let you stay like this. I hope the rheumy could start you on something better to control it. Make sure you let your rheumy and GP if applicable know exactly how the arthritis is affecting daily life and the pain you are in and lack of sleep. You deserve to feel so much better. 💗

vonniesims profile image
vonniesims

Can you afford to go privately? One consultation will probably set you off on a sensible regime. I know we shouldnt have to, but sometimes it is worth .it. I did it once and he spent 45 mins going over every problem and every joint. Money well spent

in reply to vonniesims

I have thought about resorting to private treatment but sadly it's too expensive and cannot get private health care insurance because they state if you have existing health problems then they won't consider you.IGood to hear it was beneficial for you and sincerely hope your pain continues to be controlled.

Luludean profile image
Luludean in reply to

Hi Minstrel , Be selective when choosing private care . I have twice had appalling treatment in the local private hospital . One gynaecological and the other rheumatomogy . The rheumatologist ( charm personified) diagnosed Polymyalgia in first appointment and put me straight on Prednisilone . Wonderful all pain vanished and I was hoovering the house at 4 am. My doctor son in New Zealand exploded when I told him . I had not had any tests which could have revealed Polymyalgia.

When I got the consultant’s letter and bill I was totally astounded! He wrote that he had examined me , decided I was suffering from Polymyalgia and had significant patched of psoriasis on arms BUT that he was glad to say I had tip

top heart condition and was in sinus rythm .

I have had mitral valve repair ( significant scar) and persistent A F.

The latest scandal involved the gynaecology department in this hospital .

I ended up in A and E in agony . The private hospital could not provide a follow up appointment , to sort out the

problem they had caused , for a week !!!!

NHS sorted me out in one visit , free of charge . A humbling experience !

Evie3 profile image
Evie3

So sorry to hear your pain is not under control. I hope you have an appointment soon with your Rheumatologist. You should be on a Dmard (disease nodifying drug) or similar to get the flare under control and not just steroids. We all feel your pain 😭. Take care

in reply to Evie3

Thank you for your concern , a little sympathy and kindness helps lift my spirits. Fingers crossed I will finally get seen but the way things are where I live it could still be several months wait.

Chockyuk profile image
Chockyuk

Hi 👋 I had 3 Depo injections in the past year, and yes, my skin is like paper, it rips so easily.

I get what looks like blood blisters on my arms and hands. Most unsightly 😔

I’m sorry your meds don’t seem to be working, is there anything else you can take, it have you tried everything?

Xx

in reply to Chockyuk

Thanks for reply, so comforting to know I'm not in my own with experiencing these awful marks which are embarrassing as I'm sure people think I self harm or am contagious. Just towel drying my arms or applying body lotion and I'm smothered with these marks which come up instantly and take weeks to go. How ridiculous.I have not had a meds review since I started them in 2019. I'm on a fairly high dose of steroids daily along with Athrotec, Omeprozole and the strongest strenght Paracetamol. Also on 2 inhalers and occasionally use of a nebuliser. I feel that after this amount of time my body may have become immune to them and so not having much effect.

I finally after a year got to see my GP. and he has made urgent referrals to my Rheumatologist and my Thoracic specialist so just have to wait for possible appointments.

Chockyuk profile image
Chockyuk in reply to

I hope you get it sorted soon Minstrel, you sound like you might need something other than steroids. My Rheumatologist is always keen to get me off them.It’s horrible how thin your skin can get. I popped into the garden last week to cut down some bushes.....big mistake, I didn’t cover my arms and I caught myself on a branch, blood everywhere 😖....the bruising takes ages to go as well.

X

Hi - I am 21 years with RA. You need to have your medicines changed. It takes a while to arrive at one that works without side effects. I am currently on a biologic - Orencia which worked 8th weekly injection in and without any extra pain relief and no side effects so far. Pain relief is priority and also controlling the RA - don't leave it any longer.

in reply to

Thank you for your reply, you poor luv only 21 and to have this dreadful condition.It was suggested a couple of years ago that Retuximab a biological treatment may be good .I researched this and it clearly said not to be given if you have breathing problems which I do cause of having half my lung removed due to cancer and also R.A. is also damaging lungs.This was to be given intravenously and would last 6 months, and no reversal treatment if it caused problems. This scared me so I was reluctant to try this.I did after a year finally get to see my GP. and he wasn't at all happy with how I have been neglected.He has made urgent referrals to my Rheumatologist and my Thoracic specialist so just a waiting game but how long for who knows.

Glad to hear you are on a treatment that suits you and is keeping pain under control.Best of luck.

oldtimer2 profile image
oldtimer2

Yes I too have purple patches everywhere and I hate them - the slightest touch and they appear, even recently a cuff of a sleeve resting against the skin of the forearm slightly too tightly.

But your treatment sounds negligent! Please nag and nag until you get better treatment. The options for treatment are on the NRAS treatments page, attack your rheumy team politely and firmly with requests for review and better treatment. You should NOT be left in such pain! If you can't get hold of them by phone then write to the consultant and complain (the complaints contact will be on the hosptial website) if you don't get progress very soon.

in reply to oldtimer2

How nice to hear you also have the same problems with your arms, makes me feel less of an oddity.Like you just the slightest touch i.e towel drying my arms or applying body lotion instantly brings up loads of red marks which take weeks to go. I'm sure people think I self harm or have something contagious.Thanks for your advice, I will keep trying to get help.

nomoreheels profile image
nomoreheels

Hiya minstrel16, welcome. You are really not being well controlled by any means which makes me concerned. Along with others who mentioned meds, as you only mention prednisolone, an NSAID & limited pain relief as your only means of medicating your RD you need a review & promptly. I don't know which DMARD would be suitable for you, maybe hydroxychloroquine as an initial thought. I guess you have already tried pushing your GP into contacting your Rheumy for you to be seen in clinic. If this hasn't been forthcoming contacting his Secretary may be the way to go, ensuring you explain as you have to us just how poorly controlled you are. The phone number will be in any correspondence you've had from your Rheumy, your copy of the letter sent to your GP or on the hospital website. Our clinic appointments were affected by covid but many of us are now being seen again, I’ve had 2, I have another later this month, & I’m generally well controlled. You've been waiting long enough considering your current state so it's time to be your own best advocate & really push forward now & not wait to be contacted.

I'm pleased you've found us, keep talking. Contact with those who have experienced similar issues helps makes us feels less isolated, supported. As others have mentioned maybe try contacting the NRAS helpline, 0800 298 7650. They are there Mon-Fri from 9:30am to 4:30pm to help & offer advice.

in reply to nomoreheels

Thank you for your reply and your concern for my wellbeing. I did finally after a year get to see my GP. today and he has made urgent referrals to my Rheumatologist and my Thoracic specialist. I don't hold out much hope for this to happen quickly as where I live Drs surgeries and hospital are still operating as if we are still in the pandemic. Still at least I will be on their lists so that's an improvement.

nomoreheels profile image
nomoreheels in reply to

I do hope that proves not to be the case in this instance & you are seen soon. Keep on top of it. It's the creaking door that gets the oil!

Happy5 profile image
Happy5

Feel for you yes know how vile it all can be, pain, no mobility, fatigue etc etc.Concur with others that you're being kept on steroids not really best option.

I have had to have intra muscular steroid injections and also had them in my knees.

Have never been kept on it constantly, I have an advice line number which I use when

I'm really struggling, and have always been seen withing days usually 2-3 by specialist nurse if need be.

Regular reviews about your condition with your RA team is vital plus getting them to "talk" with other medical teams dealing with other conditions you have.

Hope you find a resolution.

🤗

in reply to Happy5

Thank you for your understanding it helps a lot. After a tussle with receptionist I finally after a year got to see my GP. today.All the posts I have received encouraged me to do so and to be firm .Very out of character for me. He has made urgent referrals to Rheumatologist and Thoracic specialist so now just got to sit back and wait .

Blackberrywine profile image
Blackberrywine

I'm so sorry you are suffering. I had similar experience in suddenly just waking up with it. The pain was horrendous. I have tried all the dmards and a few biologicals, plus steroids. I've given up on meds for now as the side effects for me personally just weren't worth it. Apart from the autoimmune issue I was rarely sick with anything until I started biologicals.

Not perfect, but I've had considerble success with the ketogenic diet...I've gone very low carb. It's taken about three months and I now have very little pain, and can walk without a stick short distances. The exhaustion has not gone yet, and I won't be doing any marathons, but things are better. It's not for everyone, and might not work, but maybe worth a try? Many folks with autoimmune issues seem to find it useful. I'd reached desperation point, so just went for it. I do notice if I slip up and have sugar or grains I'm in trouble.

I do hope you find something that works for you soon.

Mmrr profile image
Mmrr

I'm so sorry to hear that you are going through such pain.

I have been on varying doses of prednisolone for around 5 years, with my NHS rheumatologist loosing interest in even listening to me. I've been on all the traditional DMARDs, biologics and JAK inhibitors.

Presently I'm changing rheumatologists and am waiting on MRIs, please don't suffer in pain, ask for some help, do it in writing, writing things down often gets better results.

Angels54 profile image
Angels54

Hi , I just feel I’m reading about myself, dealing with all these symptoms, I am on 3 rd biological had recent infection and not getting any relief, also on 7 mg steroids, waiting for call from nurse . I now feel my legs can’t hold my body up . It’s a waiting game , this pain can be unbearable, thinking of everyone and hope we get sorted soon 👍

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