Chronic Rheumatoid Arthritis

[Robwill]

Does anyone else on this site have such severe RA that they are almost house bound and have great difficulty walking? If so, how do they manage from day to day and what medication/s have been the most helpful?

[KittyJ]

Hello Robwill. Yes this was me and I am pretty sure a lot of us when we were first diagnosed. I was housebound and couldn’t get out of bed or wash or dress myself at the start. Are you newly diagnosed? Are you on any meds? I am now on biologics plus other meds but we are all different and different meds work differently for each of us, it’s trial and error to find the ones that work for you.

[Hidden]

KiityJ is right we are all different. I was diagnosed 3 1/2 years ago did ok on methotrexate I mainly had swelling and stiffness no pain be diagnosis but from February I have had all of the symptoms you have described still trying to fin the golden mix of medication. As kitty says trial and error it just takes time 🥺

[Deniseelk]

I can add to your reply already received and although my ability to walk has always been pretty much ok ( I do have an issue with my left foot but manageable by wearing memory foam insoles so had to change all my shoes) I have a destroyed wrist and issue with fingers of other hand which likewise meant I had to change to an automatic car and whilst I was “ at my worst” before the medication kicked in I couldn’t dress myself / write / use the keyboard of my laptop/ open jars/ lift kettles / put on make-up/ showering was very tricky and likewise washing my hair, etc, etc. However, things DO improve and when the inflammation eases ability to use your body likewise improves. Also pain levels drop and sleep improves then being able to use your body means muscle strength improves as does your general well-being! We are all different and takes different times but I couldn’t believe things would ever get better whilst I was in the thick of the inflammation! I now have a new “ normal”. Do talk to your Rheumatologist about your concerns incase there is anything else they can offer you, physio, better meds, splints, hydrotherapy etc. Look after yourself, pace and do things that make you happy!

[AgedCrone in reply to Deniseelk]

So agree that when you feel better you should start moving & getting on with things .... slowly at first of course .....but don’t just sit there clutching the part that hurts ......because as they say if you don’t use it you lose it!

Yes it will be painful...but slowly & surely things will improve...but we have to put in the effort & believe that things will get better......just sitting waiting for pills to do all the work isn’t the answer.

[helixhelix]

I think you might be askimg for your mum? If she was diagnosed 40 years ago then the options for treatment then were much more limited, and the understanding of how to treat it was much less advanced than now. So perhaps she has suffered joint damage?

There is a much wider range of drugs available now, but the problem for your mum is that some of them might not be suitable for her at her age. Especially if she has other medical conditions.

Do you know what drugs she has tried, and what her current treatment is? And has she been offered referrals to occupational therapy, and a podiatrist? Both can help with mobility. As can physiotherapy as it is also possible that she has lost muscle mass and needs help trying to strengthen her legs to keep what mobility she has.

And do you, or another family member, go to appointments with your mum so you can make sure that the rheumatologist is doing all they can to help her?

It is a horrible disease, and those of us who have been diagnosed more recently are lucky to have a greater chance of a normal life. But it is possible that there is more that can be done for you mum. So push her doctors!

[AgedCrone in reply to helixhelix]

Ah...I didn’t realise Robwill was replying for his 86 year old Mum.

I’’m not quite that old...but getting there, & I honestly think at that age keeping the pain to a minimum is the most important thing. After all, I don’t think many 86 year olds, having had RA for 40 years or not, are wanting to embark on a lot of physical activity. Before I am shot down in flames...yes I know there are a few who do...but probably not with RA.

But it is reasonable to expect to be able to leave her house.

I think,if you have had RA for 40 years & not had regular physio, it is very likely that joints have now stiffened to such an extent that maybe only with the extra help of physio now , would things improve....but at 86 will you feel up to it?

So all you youngsters here take heed ...even if if hurts like hell....keep your joints as supple as bearable. I do know to really do the exercises your physiotherapist advises is a blooming great boor,.....But I found out when I broke my ankle skiing at 40...prior to having RA...it pays off...the ankle that was broken is no worse than the unbroken one....not even any osteo in it,I’m not boasting I obeyed my physio ......in my case if I couldn’t walk for hours & wear 3” high heels I would have lost my job....kind of concentrated the mind.

I think HH is right...Rob should try to go along with his Mum to her doctor & see what can be done to improve her quality of life.

After all, us oldies with RA are not brain dead...we still want to participate in life around us....but at 86 we will probably all need a bit of help.

[helixhelix in reply to AgedCrone]

At 86 my mum was still going on walking holidays by herself in mainland europe....and she didn’t take up exercise of any sort until she was in her late 50’s. So it does pay off!

I tell myself that many a morning when I struggle to motivate myself to get out the door for a brisk walk...

[AgedCrone in reply to helixhelix]

Sadly my Mum didn’t make 86...... But the day before she died she was collecting her younger friends library books for them. Takes all sorts.

I have just been out for a walk but chickened out after 20 minutes because even though it was sunny....it was so COLD.

I tell myself it’s easier to exercise in the warm... .but then in the summer I tell myself it’s too hot,

[wishbone]

I don't go out much due to damaged joints in my feet. I don't drive so when I do go out, and depending on how far I have to walk from a bus stop, I often use a taxi which is not a cheap way to travel as you know. My children drive so more often than not they take me on longer journeys to hospital appointments and the like. I have other problematic joints as well as my feet so have difficulty doing certain things in the house and need help off my wife, especially with dressing and to reach for some things mainly due to bad shoulders.

edit... I wouldn't be without my riser/recliner chair which has helped my knees no end.

[Pamelah5]

Hi Roswell,

When I was first diagnosed I couldn’t even get out of bed on my own, couldn’t walk without severe pain, trying to wear boots which were so comfy like slippers were a big no no. Driving a car felt as though the soles of my feet were on bare metal pedals. Was unable to put ski boots on let alone ski! Gosh, thinking back to how far forward in feeling better I’ve come in having RA for 3 years. However I do now have other conditions, such as Coeliac disease, IBD. I take each day by day. I have recently been taken off anti inflammatory medication due to having CKD. Kidney function have improved slightly since stopping.

You will start feeling better just give time, also your meds they can change if your not responding well, medication for me took 6-7 months to kick in, you need to persevere they can help with Cortisone injections which I was given, or steroid tablets until they do.

Best wishes

Pamela x

[Agathiyar]

Hi. I got all RA simpotms during my first pregnancy; on my last semester was so bad I was crying of pain while trying to move ( pain was in my hips and knees). My OBG never took it serious and did not so any investigations, saying after baby delivery everything will go back to normal. WELL...it did not...So after few blood test and X rays post delivery, the ortoped doctor prescribed Diclofenac...was like rain water, refreshing for 30 min only. The pill that clear my inflamation right away and took it only for a week was PREDNISON.

I did not took medications after that episode but I am trying to sleep well ( 8 hours), keep away from cold weather and eat less beans and other foods that give me indigestion ....and then inflamation would immerge.

Hope you are better soon.

[sylvi]

I struggle to walk, but I am not sure it is due to RA as I have spondylisis in my spine and worn discs and joints.xxx

[AgedCrone in reply to sylvi]

But Sylvi....if you will keep wearing those 4” stiletto heels & dancing all night..you are lucky to stand up......let alone walk at all!💃

How are the decorations coming along? 🎄🎊🎄

[sylvi in reply to AgedCrone]

Oh the days of wearing 4" stilettoes are but a distant memory these days darling.

The decorations are done apart from the odd item that comes across my path darling.xxxx

[AgedCrone in reply to sylvi]

Bet it’s looking lovely!

[auldreekie2]

I am 4 years down the line with my RA, and I am worse than ever, I do not get out apart from going to hospital or doctors. this will be my 14 medication they have put me on ,nothing working. in the last two months I have been admitted to hospital, just not be able to walk, due to my hip with RA and OA. 1st time I was in for 6 days, 2nd time 5 days, I do not know if you get different strengths of RA.

[Frankiefocus]

Hi Robwill

My knees and shoulders got effected with RA first two years ago. Knees were so bad I had to go up and down the stairs in my house using my back side and arms. I have been on 15mg methatrexate pen injection weekly that helps big time. But I still have good and bad days with fatique and pain and I have also cleaned up my eating and drinking habits. I follow a pescatarian diet and quit the booze which has helped alot. Everybody is different when it comes to what mediacation works for them I have noticed but I do believe a good healthy eating habit is a must.

[Hidden]

I was diagnosed nearly 8 years ago and at the time, was in a lot of pain in my back and knees but I could still go for short walks and get on a bus and carry shopping back etc. Over the years, despite seeing a rheumatologist, I have gradually got very much worse to the extent that I can no longer walk more than a few yards or go out on my own. I now have pain in my back, knees, feet, fingers, neck and shoulders.

My husband has to help me to wash and dress (thank goodness he is now retired). We have had to buy a stair lift and a lift for the bath.

I had a really good rheumy at first who said she would get to the bottom of it all and help me, but she died in a road accident. The next one was reasonably good, and the next one was dreadful so I moved to a different hospital. I am now seeing one who can be very straight faced and difficult to talk to. However, last time I saw her, I wrote a letter to her to be read before I saw her and she was much better and I am going to start on a different medication very soon.

I haven't been able to start on it yet because a month ago I had a complete shoulder replacement and had to come off my meds for two weeks before it. Then just when I should have gone back on it, I had some infections and had to stay off it because I was put on antibiotics. However, I am starting back on it (Mtx) today and then in four weeks time, I will add in the other med (Leflunomide). I have never been offered biologics which I have asked about several times as the rheumy says that I have OA as well so they wouldn't work for me. This seems silly as I have three types of arthritis, OA, RA and PsA.

I hope you get some relief from your pain soon Robwill. I know how you feel as I don't drive either and it seems that so many people who have RA are able to get about and do things that are impossible for me.

[wishbone in reply to Hidden]

Sorry you've been having such a rough time of it. Perhaps someone can correct me if I'm wrong, but can't say I've heard of someone not being able to take biologics because they have OA as well as RA. I have both types yet was given biologics by my rheumy, as I believe other people here have too.

[helixhelix in reply to wishbone]

It could be that the greater problems are due to OA and biologics will do sweet FA for that? These days (fingers crossed of course) my RA is controlled, but it is the OA that causes me daily grief.

[Hidden in reply to helixhelix]

I think you are probably right there as the rheumy says that my greater problem is OA. However, I feel that if the biologics helped the RA and PsA that I have then at least it would be better than no help at all. I am sero-negative but that is known to be the case in PsA for a lot of people.

[helixhelix in reply to Hidden]

Have you had a discussion with your doctor about which aspects of your pain and lack of mobility might be down to RA/PsA? And whether your RA was controlled or not before your shoulder op? As biologics don’t work for everyone, and carry risks too. So sometimes the devil you know, ie MTX and Leflunomide, might be as good a solution. My triple therapy DMARDs worked very well for me for 8+ years.

[Hidden in reply to wishbone]

I think you are probably right there as the rheumy says that my greater problem is OA. However, I feel that if the biologics helped the RA and PsA that I have then at least it would be better than no help at all. I am sero-negative but that is known to be the case in PsA for a lot of people.

[nomoreheels]

Hiya Robwill, welcome. I think as your Mum has had RD such a long time its possible it is considered severe/chronic due to not having access to the meds we're fortunate to have today when she was diagnosed. This itself may be in part the problem but as you haven't given us any ideas of meds she has tried it's a bit difficult to know what to suggest.

I wonder, do you think it would be helpful to have a good talk with her Rheumy about how limiting it's made her life, that is if you don't normally attend her appointments with her? If not that might be a good start, often Rheumy's warble on & things can easily be missed, not wanting to blame her age it could be she's just accepting of what results from her appointments & possibly finds it difficult to express how difficult things are for her. I say this as otherwise I would have hoped she wouldn't be as she finds herself now. Damage may have be done over time but there are good meds nowadays which could allow her to live better than she is now.

Unfortunately it won’t be helpful to recommend which meds have been most helpful for us, that would be what I'd hope your Mum's Rheumy would suggest & discuss. What may be helpful is researching what is available & which she's already been prescribed in order to discuss her options with her Rheumy, this may help to prepare nras.org.uk/ra-medication. It could be that not all would be suitable but it's a reference point to draw up a list of questions needing to be asked.

If there's anything else we can help with just ask, or the NRAS helpline could be another option if you'd like to talk to someone - Freephone Helpline: 0800 298 7650 Mon-Fri, 9.30am - 4.30pm. They're very helpful & clued up on all things RD.

[mickeysmom34472]

I have severe RA and am still working on the magic formula. I have been on mtx but had to get off although it did keep my RA at bay. Now am on Leflunamide and that isn't doing the job. I have been added Humira and I am not sure if thats working or not. I was given prednisone while waiting for my Humira to come. Off prednisone and its been 3 months now. Had a week of agonizing pain once the prednisone was out of my body so I have been given methprednilisone along with the Humira and Leflunamide. Weaned of methpred and got pain again so back to taking one every day. Sorry this was so long. Best of luck to you, everybody is different

[BUDGIEBURDEKIN]

Your not on your own here, there’s a lot of people with their pains but maybe you could get some ideas of copping with their pains. Just a thought because we all suffer from time to time.

Philip

[Carol41]

Hi Robwill, since the birth of my second son in 1976 I have had numerous drugs including steroids methotrexate and biologics which I cannot take now after an infection.

I have a total hip replacement, 4 revisions, infections in the hip, 3 dislocations and now wear a brace to prevent further similar problems. I have had my neck, C.1&2 fused, a shoulder replacement and several operations on my hands. Not quite totally bedridden, I need help with washing, dressing, using cutlery and I cannot use a pen so cannot sign my name. Eating is uncomfortable, food needs to be cut up so that I can feed myself with a fork or spoon.

I have a hospital bed in my sitting room and manage to walk short distances in the house with the use of a walking frame. I have a power chair ( I can no longer drive my mobility car) and get out of the house as often as I can.

Although I am in constant pain and my hands are getting more twisted and painful despite splints and physiotherapy I have been told 'the damage is done - use morphine patches'.

I am totally dependent on my long suffering 81 year old husband . A weekly balance class, trips to the cinema, shops and various medical appointments and when the weather is O.K.

trips to the seaside or local tourist attractions get me out of the house. At home I spend most of my time using my laptop ( slowly and painfully with 1 finger) reading and watching T.V.

I hope this is of some interest to you. Wishing you well Carol.

[Eiram50]

Sorry to hear that things are so poor for you.

There are days when I simply cannot get out of the house and although diagnosed over four years ago, my RD is still not under control. The damage has been swift, significant and ongoing. In the four years, I’ve had both hips, both knees replaced. Surgery on feet and wrists and I’m waiting to have both ankles replaced.

However, I am in biologics, methotrexate, leflunomide, arcixia and various pain killers and find that although things may not be under control, they’re better than they were in terms of how I feel- if that makes sense? It’s the best combination I’ve been in since diagnosis.

Over and above this, on better days, keeping mobile and engaged with life, for me, is the best tonic x

[193639]

Hi there,

I was house bound for 7months when first diagnosed in 2012 and off work for 17 months. I had polyarthritis (RA) that basically means every joint on my body was effected from my toes to my jaw. After six months of all the usual pills I started with Biological meds Enbrel (entercept) and methotrexate injections. Although not perfect but I am in remission and stable and work full-time. If your pain is severe you can have a kenalog injection (steroid) every three months or so. I would recommend straight into the effected joint rather that your backside as it is more effective, for me anyway. I have not required this since taking biological medication. I do take tramadol (two in the morning) but stopped the diclofenac as I also have a recently diagnosed genetic heart condition.

I took advice and researched what to eat and what not to eat. The usual advice avoid alcohol, (especially with methotrexate in hot climates), sugar, white bread, pasta, dairy and most high gluten foods. (I know all the enjoyable stuff). A few brazil and walnuts in you cereal and sunflower seeds provide the good fats, a small tweak in your diet may work for you. I also take one fish oil capsule and sprinkle milled flaxseed in my food as it is high in omega 3.

It can be difficult but stay positive and have good thoughts, you are not alone.