Seeking Reactive Arthritis success stories

[nh_user_19881]

Hi,

My hubby has been suffering from RA for over three months, but was only diagnosed about two months ago. Since then he's been taking Sulfasalazine tablets, 2X2 tablets a day for the last month. To manage pain, he takes Cataflam (50mg) 2X1 tablet a day.

He has bad and worse days, with severe pain in the morning gradually fading away as the painkiller kicks in. Then there are a few pain-free hours in the day so he manages to go to work (he's a teacher), but the pain returns gradually starting like a clockwork at around 4pm (although it seems to have returned earlier and earlier in the past few days).

We've been so hopeful that the meds would start working but there has been little or no improvement. His pain migrates around his body, from foot, to back,to chest, to jaw, to knee (a new pain), lower back, shoulders, often affecting more than one joint at a time.

In the past week he's also developed severe fatigue. He's been asleep before our little one-year-old son, who goes to bed at 8. He's been depressed too, partly because he's been putting on weight as he is not able to do exercise, and partly because he is losing hope for recovery and feeling down because he can't be the physically active daddy he'd like to be. Also, we're planning to try for another baby and while on Sulfasalazine, our chances are slim and there's also a risk of abnormalities. I know that many RA patients are on antidepressants, but we hope he can manage without them.

I've read that Sulfasalazine doesn't take effect for the first 12weeks. Is there anyone out there for whom this medication has been effective? How long was the recovery phase?

I know there's no way to predict how long my dear hubby will have to suffer this horrible disease, but reading success stories would help him keep the glimmer of hope that he will recover one day alive in him.

[nh_user_18387]

Hello,

Up until last week I have been on the same meds and dosage for 10 months, the docs also said the same with me in that it would take 12 weeks for them to kick in! My symptoms were not as bad as your husbands sound but did Sulfasalazine work?? Well I feel better after 10 months of taking them and I'm 95% back to normal. I dont think my knee will ever be 100% again, even if I took Sulfs for the next 50 years but I can function normally which is the most important thing. Because of this I decided to voluntarily stop taking Sulfs last week. Also I am sick of necking pills.

I think excercise is a major player in recovery. Your husband might want to low impact sports like swimming or a excercise bike at home to keep any lower joints active and help build a sweat to lose weight / fight depression (my mountain bike was a savour as it got me outdoors). Overall I think it is worth taking them but do not just rely on them. Keep reading about how other people have coped with ReA (i.e changing diet, ointments, acupunture etc) and hopefully you will find your own method of dealing with it.

I hope this helps in some way.

Best Wishes

G

[nh_user_20528]

Has your other half been tested for Lyme disease (caused by bacteria from a tickbite)?

In and since 2000, I thought I had RA (knee pains, stiff fingers, back and neck pains - alterating and moving around and unusual fatigue) although doctors said I didn't have artheritis.

Only in 2010 and by chance I discovered that all my health problems over the years fitted the symptoms of Lyme disease. If you feel the need to get tested (Elisa is not reliable, Western blot is better but ultimately it's a clinical diagnosis - I'd recommend a private hospital in Hemel Hempstead or a GP specialised in Lyme - many ordinary GPs are ignorant).

All the best.

[nh_user_23963]

I had a bad case of RA just over a year and a half ago. I am only 18 and it was the most agonising experiences iver ever had.

My pain was everywhere, hips were the most painful, to the point where i was bed bound for 2 months. I was on Sulfasalazine for two months before the doctors decided to take me off of them as i gained a lot of water weight and just wernt helping in anyway, instead they gave me a large steriod shot into my hips which after 2 weeks eased the pain tremodously. I was also on diclofenac and co-codemol to try and control the pain.

This was ongoing for about a year, i would get better for two months then one day i would wake up and coudldnt walk. A year on i still get good days and bad days, like today where my fingers swell, hips, knees and elbows are painful.

I found that no medication really helped, just let the RA run its course. But i fount that going out even to town with my mum while she pushed me round in a wheelchair helped my spirits rather than laying in bed all day.

Hope this helped.

[nh_user_24601]

I am fighting with ReA. My ReA is due to a bacteria infection. My left foot is swollen and MRI shows fluids within the joints. I also have the same pain that migrates around my body. My doctor is treating me with antibiotics and I am also taking sulfasalazine. This is my second week on it. This is a long process. Please Jaybirdie, ask your husband's doctor to see if he has any infection. Please keep us posted.

[nh_user_38660]

Can anyone share an update on how their Reactive Arthritis is doing?

I developed Reactive Arthritis over a year ago and am still unable to walk.

THANK YOU to anyone willing to share!!!

[nh_user_19881]

Hi HopeforReA and others who have replied to my call.

Firstly, I apologise for not having replied or updated our status for such a long time. The reason is that thankfully, my dear hubbie (DH) has recovered in the meantime and we were able to move on with our lives. Only now that I have been notified of HopeforReA’s comment have I been reminded that I must share our experience and give hope for other sufferers.

Basically, DH went from bad to worse with his symptoms, his pain migrating around his body from one joint to another (ankle/foot, knee, chest, shoulder, jaw, back). He was on Sulphasalazine and was seen by a doctor every few weeks for blood tests, but the pain did not lessen. He was taking 2 Cataflam (50mg) tablets a day for his pains, but there were days, he would have wanted to take more, were it not for his fear of becoming addicted/immune to the drug. It got to a point that the visits to the doctor became routine, she’d collect the fee, prescribe the expensive drug, say that she sees some improvement in the foot (true, but how about all the other pains), but nothing changed. DH became more and more worried about the possible side effects of the medication, and got to a point in April (he fell ill in December) that he decided to stop seeing the doctor and stop taking Sulphasalazine, and take only the painkillers as they were the only things that had made a difference. Also, we were trying for a new baby, and the drug causes temporary infertility. Instead, he wanted to treat his condition with natural products. He started to eat blueberries, and other anti inflammatory fruit, drank acai juice and green tea, ate walnuts and other types of nuts and 75%+ cocoa chocolate. In addition, he started to take a variety of vitamins, which he still takes today: 2x1000mg Omega 3 pills(300mg active EPA/DHA), one Vitamin E (E-400i.u. d-Alpha.Form) pill, one Multivitamin (with minerals) tablet, one slow release 1000mg Vitamin C tablet and one 100mg iron tablet daily. In addition, he is taking 4 magnesium (250mg) and 3 zinc (15mg with copper) tablets a week. We created this vitamin menu for him based on research we did online.

The summer was difficult, and towards the end DH developed strange stomach aches and had diarrhoea daily, early (3-4am) in the morning. The stomach ache went later in the day after eating his breakfast. However, the ReA pains started to subside, and he went from having to take only one painkiller, and then he had the first few ReA free days I think around September, which was like a miracle. He had also started to do gentle swimming every day, 20 minutes only, but he felt much better for it. At the same time, he started to see a gastroenterologist and had numerous tests, CT, biopsy, and could find nothing that would cause his stomach pain. In the end a test for H-Pylori came back positive and DH was treated for it with some antibiotics (sorry don’t know the type from the top of my head). However, the stomach pains came back after a while, and so he decided to stop drinking cow’s milk and even now he drinks soya milk only.

He has been ReA free for almost a year now and we are living a perfectly normal life, with our new baby daughter, who is 7 months old now, and our lively 2 and a half year old toddler. DH has become really fit and is now running 10 Km every day on the treadmill. He still has a weak stomach every now and then.

I hope and pray that we do not ever have to face this horrible debilitating disease again. I also hope that perhaps with our story, some of the ReA sufferers out there will get a glimmer of hope that their condition too will improve one day.

[nh_user_38867]

Would love to find out what antibiotics he was treated with! Other than that, congratulations to getting your life back. I can't wait

[nh_user_47273]

Hi I am 53 yr old female, previously fit and well. Went on walking holidays, cycling and worked full time. 3 months ago I suddenly felt very unwell with swollen fingers, generalised joint and muscle pains and hot/cold sweats. Have had all tests for rheumatoid, lupus, lymes disease etc. The only abnormality was raised ESR and CRP. I was in so much pain which did not respond to naproxen that the GP gave me steroids and 3 months later am still slowly reducing. I did come off after about a month and ended up in AE with palpitations, feeling faint and generally very unwell. Consequently was put back on 40mg prednisolone and have now reduced slowly to 3mg. The GP diagnosed reactive arthritis but the rheumatologist did not think that would have made me feel so systemically unwell. Was feeling much better last week, only had vague aches and pains and duly reduced steroid by 1mg as advised and now aching, very very fatigued, experiencing sweats again. Not sure if this is a side effect of the steroids, has anyone else experienced these sweats, worse on exertion but come on day and night. Feels more than normal menopausal flushes. Fingers still puffy but am able to wear rings again. Feel as if am roller coaster at the moment, have few good days, feel almost normal then suddenly feel like someone has pulled the plug again! Will it ever end?

[nh_user_47479]

I have had ReA for two months now from big toe up to my jaw bones and am in excruciating pain, I am only

45 and have been very active in the past, now I am unable to get up from a chair by myself or if I do it takes

me 15 minutes or longer.

I think it is such a degrading condition.

However I got to see a consultant yesterday and they are prescribed me with a weeks worth of antibiotics

along with steroids for 4 weeks starting with 20 mg and then reducing by 5 mg each week after.

I am trying to keep positive but after reading some of the posts on here I am not so sure. My heart goes

to others as the pain is awful. But at least I don't have psoriasis arthritis. I try to through the pain. I have

only cried once in pure frustration of not being able to get up.

[nh_user_47273]

Hi there, you are very brave if you have only cried once, I have shed more tears these past months than in a lifetime! I am finding it very difficult, feeling better one day and positive only to be completely washed out the next. I feel may never get better. GP has upped my amitriptyline (which I was taking at low dose for pain and to help me sleep) to try and stop me crying and ease the depression. I hope you feel better soon.

[nh_user_47479]

Hi Fat Fingers, thanks for emailing me. I have a loving family who have helped me a lot since I came down with this at the beginning of November. It took me a while to stop being proud and to accept their help. Since being prescribed with antibiotics and steroids I am starting to feel better not as painful.

However I am getting sore throats often 4 in the last 3 weeks.

Last night was the first time I managed to stay in bed instead of getting up and watching the TV until the

early hours and then having to have a nap to get rid of nausea, even though I woke up every hour.

I believe that I am blessed as having read other peoples stories I am not so severe.

I am feeling more positive and feel that I can face/alter they way manage if it should be short lived.

Fat Fingers have you seen a consultant or have you just stuck with your GP?

Before I got this infection I have suffered depression for a couple of years as mine is due to work stress

I managed to get to see the mental health team and they said that they couldn't help me and the easiest

solution was to get a new job. Well good advise but Rome Wasn't Built in a Day.

Anyway they did suggest a group called Mind and then have people who do sort of clubs to get you out

and to join in activities and courses to help you. I was told I am a high maintenance person this is good

as what they were saying that because I am seeking self help groups, being a mum, wife and working

I am being proactive with my depression. Don't get me wrong, I have had hard times when I didn't want

to carry on due to work and wanted out of that situation so I took drastic measures, so I thought.

But it turned out I didn't get the reaction that I craved as I felt more for my children. It has been so hard,

but by trying to stay positive it helps. One of the things that mind helped me with is a first aid box for

my depression. You put things in a box that you like doing and memories photos and think of the good

times. I have lots of face masks the peel off kind and memories of walking at the beach.

I hope I have given you some positive help. Please stay in touch. Merry Christmas, please stay well

and bless you.

[nh_user_47273]

Thank you for your good wishes, I have had better week. I am reducing steroids very slowly on the advice of rheumatologist but do seem to relapse for few days after each reduction. I am going to stick at this dose over Xmas and the New Year so can hopefully enjoy. My mood has lifted and am feeling more positive due to just feeling better and the increase of amitriptyline may be kicking in. I have had 4 months off work and feel cannot go back as very stressful until am 100%. A few weeks ago thought would never get back but am beginning to feel more hopeful. I hope you continue to have better nights, I found could cope better when able to sleep. I hope you manage to enjoy your Christmas and we have a healthier New Year. xx

[nh_user_47479]

Hi fat fingers

Am not having a bad Christmas it just seems like am taking two steps forward one day & then the next is three steps back. Am just so tried all of a sudden. I don't get it when am not doing much. Would it be the fact that am having to concenterate on how to pull my body weight to get up to a standing position.

Am glad your feeling better with your mind and are able to sleep. Just remember to batton down the hatches tonight for the storm. :-)

[nh_user_47273]

Hi Painful but positive

I hope you have managed to enjoy Christmas. I also experienced overwhelming fatigue. Are you still on steroids? My GP advised me they really mess your muscles up leaving them deconditioned. I used to feel as though someone had literally pulled the plug after minimal exertion. I have found that as I reduced the steroids (am only on 2mg daily now) I have more stamina. That could explain your fatigue, plus the fact that you have been so poorly. That is what used to upset me so much, it is such a shock to suddenly be unable to go out for a long walk or even go shopping. However I am pleased to say I am beginning to feel much better, I am getting out for short walks most days and definitely have more stamina. the muscle aches are subsiding and am only taking pain killers at bedtime..........There is light at the end of the tunnel. I hope you also begin to feel better soon. Sending best wishes for a happy and healthier New Year xxx

[nh_user_47479]

Evening,

Thanks fat fingers, I actually woke up and could stand up normally this morning, but it was short lived. As from last Friday I have reduced my steroids to 15 mg. I managed to walk with my daughter and the dog Gracie that we are looking after around a medium field, so at least I am pushing myself to enjoy this weather before it gets rubbish again. Knees suffering now with getting up and down from sitting position to standing. Have you ever suffered with vains popping am experiencing at least one or two a day. All we can do is take each day as it comes and try to stay positive.

I wish you a healthy and a happy new year also. xxx

[nh_user_47273]

Hi Painful but Positive

I have experienced so many peculiar feelings over these recent months, not sure about veins popping but had terrible muscle twitches, toxic hot sweat day and night. Even my skin felt odd, my face was puffy and waxy with swelling around eyes. I was grateful for the steroids initially to help with the pain but if you read the side effects and withdrawal effects they are awful. I found that when I started reducing I would have a flare and feel worse for a few days. the temptation was to increase again but the symptoms of a flare are the same as withdrawal. For that reason have persevered and am now down to 2mg. Have to go for blood tests on the 2nd but the way I feel now am hopeful the ESR and CRP will be normal. Will try to be off steroids before I go to see rheumatologist on the 30th. Keep trying to take your walks and build up those muscles again, I shall be strolling out later, also with a dog we are looking after. Take care, sending love and best wishes xxx

[nh_user_47479]

Hi Fat Fingers

It is so weird today I have hardly any pain in my knees mostly in my left bicep, shoulder and finger joints, as have been out visiting friends so not much up and down like I usually do. Also not been followed by the dog we are also looking after for another week and almost tripping up over her as she is always on my heels. Avoiding low, low settees helps I have an appointment on the 24th January. I will look up cysts under the skin. Am not getting down in the dumps over this as am off out with hubby to night to friends should be quite a good do.

See you soon painful but positive. x

[nh_user_47273]

Hi painful but Positive

Hope you enjoy your night out, it is good that you are feeling well enough to go. Do you find you have good days and bad? That is how my illness has gone, some days have felt better and perhaps done too much only to suffer for it the next day. However am pleased to say having more good days than bad now, feeling positive myself at the moment. Lets hope the New Year brings us good health and we say cheerio to this awful ailment for good xxxxx

[nh_user_47479]

Welcome to 2014 Fat Fingers

I experienced day sweats as from yesterday so needed fresh air and took Gracie out on my own as everyone was busy it was a slow walk, but I managed it. I rested for the rest of the day as I knew I had to walk back from our evening out. The evening was fun,

The walk back was not so fun long and tiring. Spent most of the day in bed today recovering with aches and pains in my muscles (Calves).

I looked up cyst under the skin but didn't come up with much so will investigate.

I think your right it will be a case of good day - bad day until the bad day ceases. I will keep you posted.

xxx