Rheumatoid arthritis : Do you get any relief from... - NRAS

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Rheumatoid arthritis

Indersisive71 profile image
54 Replies

Do you get any relief from rheumatoid arthritis. I am in constant pain in my shoulders hands and knees.

I am on my fifth week of hydroxychloroquine. I have cut out a lot of foods .eating healthy . I take paracetamol when the pain get really bad.

People say it can take up to twelve weeks for the medication to work . Even if I had one day without pain would be a blessing any tips that help will be most appreciated

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Indersisive71 profile image
Indersisive71
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54 Replies
MadBunny profile image
MadBunny

Yes it can take a while for meds to start working.I started on sulfasalazine but it was so long ago I can't remember how long it took. I remember how good it felt when things started to improve. Of course we all respond differently. Your rheum team should be able to advise you and there's lots of advice on the NRAS website. I hope you start to see the benefits soon and wish you well x

Indersisive71 profile image
Indersisive71 in reply to MadBunny

Thankyou, I have a phone consultation 1st of March . Hoping that things start to improve.

MadBunny profile image
MadBunny in reply to Indersisive71

I hope they do for you, too. All the best xx

Shalf profile image
Shalf

Hi there, I haven't been active on here for a while but occasionally drop in to read.I understand how you feel, been there!

I have been down a rocky road over 5 years with alsorts of meds which didn't work for me. I have stopped them.

My RA is now controlled with a high quality medical grade CBD. My rheumatologist is aware and infact reports that many of her patients rave about this treatment. The huge plus is that it carries no side effects. The patient information leaflets with conventional drugs show significant side effects.

Many people have different opinions re meds. I only can give my opinion and my experience with this premium quality organic CBD. I have very little pain and no classic symptoms. 10 months now and im doing well. I'm contactable via PM should you or anyone wish further information.

Suzie

Indersisive71 profile image
Indersisive71 in reply to Shalf

Thanks for your reply, I am going to carry on with my medication, It’s works for some people, trial and error , I’ll see what the specialist says. On my revue

Shalf profile image
Shalf in reply to Indersisive71

Wish you the best of luck.

Mmrr profile image
Mmrr in reply to Indersisive71

Once the meds fully click in and the inflammation is controlled the pain levels should drop. However many of us do have residual pain, even when the meds are doing their job, my shoulders ache every morning.

But you should feel a whole lot better with the meds than without them. Paracetamol and hot / cold compresses may help. When I'm achy I find that a long shower helps too, a cooler shower when I'm feeling hot and a warm shower if I'm just achy. Epsom salts are soothing too if you have a bath, or to use as a foot soak if you feet are troublesome.

As you are aware it is really important not to stop meds without a discussion with your team first, and that it does take around 12 weeks for the meds to become effective so hang in there.

Do let us know how you get on ?

Indersisive71 profile image
Indersisive71 in reply to Mmrr

I will do Thankyou I have always been very active , I will get some Epsom salts .

helixhelix profile image
helixhelix in reply to Shalf

So glad you’ve found something that helps you....

Flipper12345yellow profile image
Flipper12345yellow in reply to Shalf

Hi,My friend does exactly the same.

How do you know what dosage to take??

Lolabridge profile image
Lolabridge

Hello. It can take a little while for medicines to take full effect and, unfortunately, not all drugs work for everyone. So you will need to wait a few more weeks to know whether hydroxychloroquine is going to work well for you. Meanwhile, rest as much as you can and try using heat and cold pads to see if they give you some relief. I prefer heat but some prefer cold. For better pain relief you could try something a bit stronger than paracetamol. If you can tolerate NSAIDS then ibuprofen taken regularly will help to reduce inflammation and Naproxen, which is similar but stronger, can be prescribed by your GP. I take cocodamol which you can buy in a pharmacy but beware it can become addictive. It’s useful at bedtime to help you get a reasonable night’s sleep.

If you are still struggling after another 3-4 weeks contact your Rheumatologist or specialist nurse and ask for more help.

I do hope the hydroxy will start to work soon for you.

Indersisive71 profile image
Indersisive71 in reply to Lolabridge

Thanks for getting back , I can’t take NSAIDS I have af . And asthma. I will try the heat , I wear a compression gloves a few hours a day , they give me a bit of relief ,the way we take things for granted . Just trying to open a jar . I am thinking very positive, and this is just a blip , which can be resolved

Lolabridge profile image
Lolabridge in reply to Indersisive71

🤞🏻

helixhelix profile image
helixhelix in reply to Indersisive71

I hope it does start to work more for you soon, and if not as LolaB says contact your medical team. You need patience with this disease, it took me over a year to get settled on a treatment plan. But since then things have been good and I am 95% normal and virtually pain free. My osteoarthritis is now more of an issue than the RA!

Indersisive71 profile image
Indersisive71 in reply to helixhelix

Thanks for getting back , it’s uplifting to know that it can be controlled with the right medication , glad you are doing well I’ll be there one day👍

Flipper12345yellow profile image
Flipper12345yellow in reply to helixhelix

That's inspiring, what meds are you taking now?

helixhelix profile image
helixhelix in reply to Flipper12345yellow

I had 8 years of remission on triple therapy - MTX, hydroxychloroquine and sulphasalazine - and last 18 months in remission on MTX and Enbrel.

Indersisive71 profile image
Indersisive71 in reply to helixhelix

Did they start you on hydroxychloroquene first then bring in the other meds.

helixhelix profile image
helixhelix in reply to Indersisive71

No started on MTX and then one more, and then one more (can’t remember which order those two were in). It was at least 3-4 months between each addition.

Indersisive71 profile image
Indersisive71 in reply to helixhelix

Thanks for your reply. The specialist said the hydroxychloroquene may work just have to wail and see

nomoreheels profile image
nomoreheels in reply to Indersisive71

Hiya Indecisive71, welcome to the NRAS site. You've received good advice, nothing I can add... except I have very little grip in my arthritic hands & my h bought me this as a Christmas gift smile.amazon.co.uk/dp/B000C... I've had lots of different gadgets to open jars, bottles etc over the years but this has been a revelation. I've used it on all sizes of jars & bottle tops, even the large gherkin jars, & I've opened every one with ease.

Indersisive71 profile image
Indersisive71 in reply to nomoreheels

Thanks for your reply , I would be lost without my compression gloves Money well spent ,

LaPainting profile image
LaPainting in reply to Indersisive71

Hi..can you please tell me if your med caused problems with A.F.i am new and on a.f beta blockers and apixaben.worried about any new medicine.thank you.

Indersisive71 profile image
Indersisive71 in reply to LaPainting

Hi .no not a problem .I am on angitil & lixianaThe rheumotolagist said the medication he prescribed is ok .

In fact the pain from the rheumatism has taken my mind of my af. Dont worry

To much about taking medication you will be fine

bubblyalex profile image
bubblyalex

Hello 👋🏻 😊

Your are quite correct ... It is up to 12 weeks before you will know if it’s ‘the right one’. My fingers are so crossed for you 🤞🏻

There is a lot more pain relief that isn’t problematic and you don’t need to worry about taking ... not least ibuprofen or naproxen. Not both and naproxen is prescription. Do ask your gp for help and guidance on pain relief.

For pain I’m on paracetamol full thwack codeine 30mg full thwack and the steroids 30mg ... oh and naproxen full thwack. With these ... I can move. 🥰

Indersisive71 profile image
Indersisive71 in reply to bubblyalex

Thanks for getting back, I can’t take NSAIDS .the only thing they said I can take is paracetamol, or paracetamol &codeine. You sound so positive,👍

bubblyalex profile image
bubblyalex in reply to Indersisive71

We have to be don’t we 🥰 A bit of a blow for you not be able to take NSAID. I have to take a PPI with mine because I have gastritis. They tried to take naproxen away from me once... I was a no way I have no hope of managing nighttime without that one. Don’t be afraid to up your pain meds. It’s temporary until they find the right RD med 🤗👍🏻

Lolabridge profile image
Lolabridge in reply to Indersisive71

Yes the cocodamol I mentioned is a tablet that contains codeine and paracetamol and comes in two strengths. The weaker one you can buy over the counter in a pharmacy but the stronger one, also known as Zapain, is prescribed by your GP. You could try taking 3 doses of paracetamol during the day and the cocodamol at bed time. That works quite well with moderate pain. Hope our suggestions will help you cope till the hydroxy is working properly.

medway-lady profile image
medway-lady

Don't loose heart, I've no pain or welling and in remission. It's taken time, a bit of trial and error but the combination of AZA and Benapali is working miracles but to get there it has meant enduring a few short time side effects. I also am unable to NSAIDS and Ibrufen as have blood medications but now no need anyway as the RA is well controlled. So be patient, stick with it and see what happens you can always set a time limit say 4 months as most meds like LEF for me didn't work for 12-14 weeks then it just kicked in and was great for years.

Fruitandnutcase profile image
Fruitandnutcase

It can take a long time for hydroxychloroquine to kick in. I started off on a three month course and was told ‘if that works’ ask your doctor to prescribe hydroxychloroquine. I think I should have started the hydroxychloroquine sooner because I’d been on the steroids for a good while before I got my copy of the consultants letter and realised I should be taking both concurrently. That meant there was a bit of a gap between the steroids stopping and the hydroxychloroquine kicking in.It works fairly well but I do top up every now and again with paracetamol, I’ve used ibuprofen too even though I have asthma and I can get away with it for a little while. I suppose I could try codeine but I don’t like the ‘hung over’ feeling I get with that.

I really like a soak in a bath with magnesium flakes, I’ve got compression gloves for my hands which feel good. I’ve also got a mitt that I put in the microwave which is quite good. I’ve tried magnesium cream to rub on and it’s ok too although it could be massaging it in that helps.

At the moment I’m using Voltarol for an aching shoulder and upper arm muscle pain but I think that is a knock on effect from something else. The diflufenac seems to be ok with asthma or it is for me. I was using an ibuprofen gel which I don’t think was good, I thought it would be ok to rub it on but maybe it wasn’t. I do think a healthy diet and staying off sugar definitely helps. Unfortunately when I hit the chocolate my body let’s me know.

Indersisive71 profile image
Indersisive71 in reply to Fruitandnutcase

I have cut a lot of foods out I’m my diet . I cant have tomatoe ketchup or brown sauce . I find it makes my arthritis worse *What sort of mitt do you use . I brought a rechargeable hand warmer but it doesn’t last long enough it takes hours to charge up *

My next mission is to try and cut out sugar in my tea , I only take 1 spoon

.but it’s hard breaking the habit

Fruitandnutcase profile image
Fruitandnutcase in reply to Indersisive71

Sounds like you’ve got your food under control. Once you’ve stopped taking sugar (and in my case milk) in tea and coffee you’ll wonder how you ever did. My mitt is a Theramit, I got it from Amazon and after reading some of. The comments I bought the men’s size. It’s not too big either. It doesn’t stay hot for all that long but it heats up in 1 minute 20 seconds.

Flipper12345yellow profile image
Flipper12345yellow in reply to Fruitandnutcase

Where can I get compression gloves please

Fruitandnutcase profile image
Fruitandnutcase in reply to Flipper12345yellow

I bought mine on Amazon. They are made by Dr Arthritis. I’ve got two pairs, I bought medium size first then a few months ago because I was borderline both sizes I thought I’d try small ones to see if I liked more compression but I actually prefer the medium size so I’ve gone back to them.. I wear either one or both at night and it keeps the wrist I broke and that hand nice and warm which stops it stiffening up overnight.

Flipper12345yellow profile image
Flipper12345yellow in reply to Fruitandnutcase

Thank you I'll get some.My splints from nhs split first wear

😀

Shalf profile image
Shalf

I find it incredible to read frequently the vast amount of complaints on here regarding the lack of efficacy with some conventional drugs AND their side effects. Its deeply concerning that many people suffer when their prescribed drugs don't work.When this happens, the same result you decribed above could occur and does.

I am here and willing to help and to share my experience. Why? Because I suffered terrible pain, swelling and every other symptom that my Rheumatoid Disease gave. Six biologics and two jak inhibitors and still no difference apart from further damage.

So my reply to this post is in the interest of others. I understand perfectly well that its each individual's choice what they do and what they trust and believe. My experience with high quality CBD and its effects are remarkable. I love the stuff which has given me back quality of life.

Each to their own which I respect.

Take care everyone and stay safe.

Shalf profile image
Shalf in reply to Shalf

Your comment apoears to have disappeared bubblyalex.Look after yourself.

helixhelix profile image
helixhelix in reply to Shalf

I hope in years to come that they will be able to work out why some drugs work for some people, and some don’t. I am convinced that there is more than one ”RA”, and you’ve got the bloody minded version that refuses to respond! Let’s hope CBD also keeps joint deformity at bay.

allanah profile image
allanah in reply to Shalf

But Shalf you know it's only treating your symptoms, it's not stopping the inflammation or joint damage.

Shalf profile image
Shalf in reply to allanah

Hiya Allanah.

If this particular CBD was only treating symptoms I wouldn't waste my own time never mind others.

Its fantastic! Not your high street rubbish!

How are you currently with Rheumatoid life? I recently had scans & blood tests, all good :) x

allanah profile image
allanah in reply to Shalf

I'm glad its helping you, you know that I only believr evidenced based medicine, as you know , and there is no evidence at all the CBD stops inflammation. I do hope they continue trials on it though as it is helpful in specific amounts for symptom relief. And I'm glad your tests are all ok but as you know I'll be sceptical and will only be using mhra approved treatments for now.

Oh and TCZ has changed my life from when we last spoke , incredible. I fell and injured my knee though in October so that's taking a bit of sorting, but otherwise all good thankfully x

Lovely to hear from you though and hope the pandemic has been kind to you xx

Shalf profile image
Shalf in reply to allanah

Ouch re your knee :(Never fails to fall and get injured just before the bad weather comes!

I haven't personally felt or seen any evidence that any of the drugs prescribed by my Rheumatology team have worked but some people claim they do.

I was also on TCZ , it unfortunately didn't change my life but it did make me anxious reading the possible side effects in the patient leaflet info! Scary!!

Im doing well on the high grade medicinal CBD. No side effects and no THC so I don't get high! 😁

You know there are no guarantees with any treatments, conventional or otherwise but there is always hope of something working. My rheumy knows and has examined me so no worries there.

Nice to chat again. xx

allanah profile image
allanah in reply to Shalf

Lol. lots of evidence base on rheumatoid drugs!!!! Otherwise the government would not use them xx

Shalf profile image
Shalf in reply to allanah

I and many others haven't seen or felt evidence of them working but many people have had success too.My experience of CBD is excellent and for that reason I wanted to share as there could be people in a similar situation as myself. Its not such a bad thing to hear about alternative treatments and others experiences wifh them. Have had quite a number of enquiries, wonder why! :) x

allanah profile image
allanah in reply to Shalf

Not evidence based at all.

essexgirl profile image
essexgirl

Personally I’m not sure wether paracetamol is strong enough to be honest ... it’s not for me ... if I’m in pain I take ibuprofen or codine with paracetamol.... or there is tramadol which you have to get from doc

But if just paracetamol works for you then that’s ok

Indersisive71 profile image
Indersisive71 in reply to essexgirl

Thanks for replying.Paracetamol or paracetamol and coidene are the only ones I am allowed Now and again I will take ibuprofen but I was told by my pharmacist I can’t take it ,I said can I use the gel , he said no , still getting in your system

Fruitandnutcase profile image
Fruitandnutcase in reply to Indersisive71

That’s exactly what I found. Years ago my GP said if I was ok with it then use ibuprofen and / or paracetamol but recently when I started using ibuprofen gel on my very dodgy shoulder I could feel myself getting a bit breathless / wheezy - not a good feeling, anyway I thought it could be the ibuprofen gel, I was using a lot of it a few times a day and when I stopped - problem solved. Your comment confirms what I thought. I’m using voltarol which is diclofenac now and that seems to be ok. So annoying to be limited when it comes to painkillers.

allanah profile image
allanah in reply to Indersisive71

Strangely my rheumy says it's one of the best drugs for RA and always says Paracetamol taken at the maximum dose allowed is the most effective.

Co codamol was the only one that sort of helps my pain plus as others have suggested showers etc. I also use a TENS machine which is a pulse type machine. It distracts me away from the pain is best description I can give. It does take time with the drugs and some respond quicker than others. I am now on bio similar as MTX sulfasazine and lefluomide were not for me so 18months and still trying to find the med for me. Do t lose heart it’s trial and error. There is no quick fix unless very lucky 🍀

Indersisive71 profile image
Indersisive71 in reply to

I was going to get a tens machine, but when I read up on it , They don’t recommend it if you have heart problem, I have A.F.

I was worried about taking so many paracetamol every day but that’s what they have recommended. Or paracetamol with coidene A bit more assured

Now with so many positive people.

allanah profile image
allanah

Just to reassure you , yes , I'm almost back to " normality" after finding a drug that suits me. I still get bouts of flare ups but nothing like before. So good luck , keep talking to your rheumy x

Indersisive71 profile image
Indersisive71 in reply to allanah

Thank you I am staying positive..I wish now I should have started taking the hydroxychloroquene .I waited 7 weeks becauseI read the side effects.but my rheumatism was getting worse. been on it now 5weeks

allanah profile image
allanah in reply to Indersisive71

Unfortunatly it can take up to 12 weeks, my GP was the go to guy in that period and gave me fabulous pain relief, he was more expert in pain relief than the rheumy. Maybe worth a telephone chat to GP?

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