I’m New Here: Hi everyone, I’ve been reading your posts... - NRAS

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I’m New Here

Nanabrodie
Nanabrodie
25 Replies

Hi everyone, I’ve been reading your posts and wondered if anyone has experienced the same as me. I was diagnosed with RA just over five weeks ago ( which took me completely by surprise) . I’d been to my GP as I had been suffering with a swollen middle finger which and been painful for quite sometime and noticed the same finger on my other hand was beginning to go the same way (I just assumed that it was my age - I’ve just turned 67 - and a bit of rheumatism ), i was feeling very tired all the time and was feeling generally achey almost flu like. He sent met to see a rheumatologist and she asked if I had any other painful area I told her my wrists seemed to have lost all their strength and occasionally swelled after doing any type of lifting or rotation. I’d also been having pain in the ball of my left foot ( I had been told some years ago that I had possible fibromyalgia and I assumed she would just confirm it). It was a great shock when she gave me a brochure to read and told me I had rheumatoid arthritis because after blood tests my GP had said that I didn’t have it! I’ve had further blood tests whilst at the hospital plus X-rays on hands,feet and chest but won’t know the results of them until I see her again. She put me straight on a 10week course of Prednisolone along side Hydroxychloroquine and wow what a difference the steroids made, within 24 hours I had so much energy, no pain whatsoever and I didn’t realise how many parts of me were swollen once it had all gone and no morning stiffness! It felt like a completely new me, I can’t remember how long it’s been since I felt like that. But now 5 weeks later and I am gradually cutting down on the steroids and my aches are slowly coming back, I know she said the hydroxychloroquine might take up to 7 weeks to take effect and I was wondering has anyone else had the same experience and did this medication help? Sorry to have gone on so long.

25 Replies
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Izzyowl

Hi Nanabrodie, the symptoms you describe sound almost identical to how my symptoms started, with finger swelling and wrist pain. This was just over a year ago. I too was started on Hydroxychloroquine and a steroid injection. Since then there have been different medications started and stopped and re started, with lots of dose adjustments and very close blood monitoring. My RA symptoms are so much better than they were which shows how effective the treatment can be. Welcome to the group. You are amongst friends here and there is a lot of support and learning through shared experience.

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DeeDB185
DeeDB185
in reply to Izzyowl

I had the same symptoms but I refused to take the medication. I saw a Naturopathic DR and was put on high mg of tumeric and Omega 3 liquid supplements from Pharmax 1,975 mg. It worked wonderfully until I stopped it at the advise of a surgeon bc I needed an unrelated surgery. Then the swelling started again but only 1 hand My carpal tunnel I think is affected too. I started keeping a food journal & recorded ONLY IF I HAD SWOLLEN HANDS...so I had gluten free Soy sauce with suchi and my hands were swollen the follwoing day very bad. Then it went down after a day. That weekend, I had Oysters and my hands swelled up terribly the next day. Few weeks ago, I had scallops - again severe selling. OK - so right now I'm very suspicious that SOY and shellfish are causing an inflammatory process in my body. I am NOT taking any of that medication any time soon. not if what I'm eating is causing inflammation.

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Nanabrodie
Nanabrodie
in reply to DeeDB185

Thank you for replying to my post. I have to be very careful what other forms of medication I take especially herbal as I take anticoagulants following twi cardiac ablations last year.

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Kalimers65
Kalimers65
in reply to DeeDB185

How did you find your nnaturpathic doctor and where exactly did you get the turmeric and liquid omega 3 from? Like you I prefer to go down this route.

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oldtimer
oldtimer
in reply to Kalimers65

I would be very cautious going down this route. Tumeric has anti-inflammatory properties and there is no evidence that it protects the joints from the damage that Rheumatoid Disease causes. Omega 3 - well it's theorectically possible that it might but there is again, no evidence that it does.

Treating yourself with things which don't tackle the underlying damage to joints and other tissues is not going to help in the long run.

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Nanabrodie

I think you need to ask DeeDB185 not me.

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Kalimers65

Sorry about that!

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AgedCrone
AgedCrone
in reply to DeeDB185

Hi DeeDB185

Of course it could just be you are allergic to Soy & Shellfish...a lot of people who don't have RA are & they just don't eat them!

Just think about what is protecting your joints whilst you go through the menu not " taking any of that medication any time soon".

Nobody takes Dmards or Biologics because they want to......they take them as a last resort to have a life....& not end up having painful joint replacements.

Do talk to your rheumy nurse & have a good discussion what is going on with all your tests.

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Nanabrodie
Nanabrodie
in reply to Izzyowl

Thank you so much for your reply. As you say it certainly does help to hear from others with the same condition. I’m still trying to get my head round this whole thing and my follow up appointment with rheumatologist (which should be within 6-8 weeks of starting medication) will be delayed because of clinic timetables being full so it will be well over 3 months before I see her again. I’ve got to look after my 1 year old and very lively 3 year old grandchildren for a week in just over a week’s time so hoping the medication will see me through that!

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sylvi

Nanabrodie my ra started with pain and tingling and swelling in my fingers. Hydroxy is a good drug to take. I think when you go next they will add to that,steroids are good in short term,but please don't stay on them longterm. Welcome to our group and we will support you to the best of our ability.xxxx

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AgedCrone

Do investigate the outcome if you don't take Dmards.

I was diagnosed 20 years ago....tried Prednisolone which thankfully caused terrible side effects.....so it was stopped & I didn't have to go through the painful business of trying to stop it.

Over the years I took many Dmards with various degrees of success, but they obviously did their job as I have no major joint damage.

I am now on RTX, & doing well.I urge you to listen to your medical team, & believe that they know what they are doing.

Although I am not cured, I'm sure I am better off than going on some unpleasant diet that has no clinical proof of helping with RA.

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Nanabrodie

Thank you. I am a great believer in listening to the medical teams and hopefully it has been caught early enough to avoid this getting too much worse to quickly.

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helixhelix

Hello and welcome. I've been reading this forum for nearly 8 years now, and there are quite a few people who only take hydroxy and have found it a very effective drug that controls their symptoms well. Hopefully they will pop in and tell you themselves.. it's considered to be the mildest of the disease modifying drugs (DMARDS) and the one that is least likely to have unpleasant side effects. I take it (along with other things) and it has given me no problems whatsoever but since it was the last drug added into my mix I can't really say how long it took to work. Just get your eyes tested at least once a year as there is a very rare, but nasty possible effect on your retinas.

And as for steroids! Love:hate in equal measures. Yes you feel like Wonder Woman but long term they are really not good news. With the oral steroids I also can't tolerate the emotional effects.

If you don't already, I suggest you do keep a diary of pain, symptoms etc as that will help the rheumatologist work out what might be best for you on your next visit.

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Nanabrodie

The only trouble i have had so far is stomach problems. I think must be due to the steroids. I suffer with IBS and have a problem digesting lactose and Prednisolone has a certain amount of lactose in them so i assume that is what is giving me problems, but i only have another 5 weeks to go on them reducing them all the time so it is something I’m dealing with.

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Gnarli

Hi and welcome to the group nobody would want to join. I'm sorry you've had this diagnosis but you've found a wonderful site filled with lovely, informed and knowledgeable people who know what it's like. Please, though, bear in mind that we represent a very small proportion of those with Rheumatoid Disease. The newly diagnosed like yourself, those struggling and a few angels happy to share knowledge are here. Those whose disease is under control are far too busy getting on with their lives.

J

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Nanabrodie
Nanabrodie
in reply to Gnarli

Yes I am aware of that I also use the Atrial Fibrillation site through Health Unlocked and since I have had a cardiac ablation and all is well at the moment I have to say I don’t use it as much as I used to.

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Mandalou

Hi Nanabrodie and welcome.

Firstly can I commend you on two things, the first being finding this forum and secondly the fact you went to your GP as I know only too well the perils of ignoring finger pain and weak wrists and sore feet.

I had explosive Polyarthritis in 2015 but looking back had several years of the symptoms you describe. Unlike you I was 25 years younger and put it down to soft tissue injury. Through over doing it from having a very physical job.

The inflammation in every joint of my body on mirroring sides left me completely disabled. It started over a matter of days with a feeling of thickness at the back of my knees. This developed swiftly into every finger joint , hands and wrists. My neck, my jaw- everything. I couldn’t wash, walk or wipe it was grim. I would moan in the night and call out with pain.

Someone here described it as someone tying plastic bags over your hands in the night and then smashing thrm with a hammer. Your skin being the plastic that keeps all the broken bones together. This was the best description of how my pain felt , gruesome as it sounds.

In my opinion there is no such thing as ‘mild’ RA the disease itself is not ‘mild’ What you can have is slow onset and despite diagnosis, sero positive or sero negative , PSA, Juvenile, Etc etc etc. Through proven researched medical intervention at an early stage as is possible can give you back as normal life as possible.

What thes treatments do long term is halt/slow the body attacking itself and destrpying your joints.

Due to my disabling start I deal now with a lot of danage the rampant inflammation caused.

I too was put on high dose oral steroids. These did exactly what they were supposed to and aided in diagnosis just likr yourself as with the taper came the return of symptoms.

I developed steroid induced diabetes which was a grim addition and after my liver rejecting all the first line DMARDS I am now happily settled on Hydroxychloroquine and the biologic Etanercept ( Benepali) which I inject once a week.

I dont think I could be a metre away from a toilet for about six months! Uuurgh.

I have been back at work for two years after 11months off which is the time it took to get the drugs sorted .

Nanabrodie, you absolutely will be able to look after your lovely grand children but you must be prepared for a bit of a rollercoaster and support from your family is vital.

I know they will expect you to be your usual self but you will need TLC and I reccomend your loved ones to read all the info they can.

NRAS is an excellent organisation for sufferers and family alike. Forwarned is forarmed.

You have categorically received exactly the treatment one would expect and I wish you the very best going forwards. I imagine they might try adding Methotrexate next . This has its own challenges but is the gold standard of treatment and works very well for most.

Let us know how you get on and any questions you have there will always be someone here to help.

Good luck.

Mx

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Nanabrodie
Nanabrodie
in reply to Mandalou

Thank you so much for your response. I have used another forum through Health Unlocked (which i found really helpful) as I suffer from AF which following two cardiac ablations last year is at the moment under control.

The pain you have suffered sounds horrendous I’ve not felt anything that bad. One of the worst pains i get is in my right shoulder and shoots up into my neck it is so bad it makes me cry out, it will happen an number of times is quick succession and then leave me stiff and aching for a number of days. I have suffered with this on and off since I was 11 years old when I was told I had fibrositis.

My husband is very supportive now that he understands what I am dealing with. Up until now every time i had pain, if I mentioned it to him, he would tutt and sigh and say things like “what next” raising his eyebrows. But since the diagnosis and he has read the brochure that the rheumatologist gave me he is much more sympathetic.

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charisma

Hi Nanabrodie, so sorry you have had this diagnosis but it is good that it was found and treated quickly. Welcome to the NRAS community where there is a wealth of good advice, sympathy from those who know how RA can be, and friends to support you.

I was diagnosed at age 62 with a severe aggressive type of RA and am very grateful not to have suffered its effects over a lifetime.

Take it easy in spite of steroids short term. RA does not like over exertion. Hope you enjoy time with your lovely grandchildren.

Angela x

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Nanabrodie

Thank you.

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E_2b

Ok, I was like you in 2014/2015...the source of my RA was an infected root canal...look up the roadback foundation. If you Are lucky you may find the source of a possible infection that could be creating these symptoms

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Caza

Hi, I’ve been taking hydroxychoroquine now for five years as NMH has said I have my eyes tested regularly, every 6-9 months. There is a cheaper brand that was introduced Quernoic (not sure of the spelling,I’m not at home) that gave me bad stomach problems but apart from that they’ve worked well for me. I can’t take painkillers , I’ve had 3 steroid injections but not keen to take them orally. I’ve looked into the extreme diets but know I wouldn’t want to keep to it. I tend to stick to a mediterranean diet by choice & have never been over weight I try to exercise every day but also factor in rest time which used to be very alien to me. As for stress 😩!! I try.

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Caza

Sorry should of said, hydroxychoroquine also makes you have very sun sensitive.

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Nanabrodie
Nanabrodie
in reply to Caza

It’s funny you should mention sun sensitivity as I have been finding the heat quite difficult to deal with especially in the direct sunlight and haven’t sat out in at all, something I’ve always enjoyed. And what little time I have been out tending the garden the parts of my skin that has been exposed hands, arms, neck and has gone very brown very quickly.

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Lyneal

Hi Nanabrodie, sorry to hear how you have been, I can relate to you, I was diagnosed 4yrs ago, I am now on Methotrexate weekly Injections, I have looked after my 2yr old Grandson, and older Grandaughters and been ok, just don’t overdo it, listen to you body and when you feel tired rest. My Rhumy nurse tells me not to do everything at once, ie don’t clean bedrooms all in one go. Do take what you are advised to because Rheumatoid Arthritis can damage the body if recommended drugs are not taken, good luck and enjoy your Granchildren.

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