Reactive arthritis: share your symptoms, how long you have had it, treatments you took and results

Bones, joints and muscles
1

Hi All,

My knees and ankles are hurting for 8 months, it was harder in first few months. I could hardly walk only for few minutes and I was so depressed. My pain started with knees and then went to the ankles. I had some inflammation as well.

Took several months till I was told I have reactive rheumatism. Nothing is visible from my blood test though. I feel better now but I have again good and bad days and mild fatigue. I am taking methotrexate 7.5 each week for 2 months now. Haven't felt much effect yet. I am constantly being told by doctor when I have pain I should take painkillers. But I want to see pain really go away not to put myself on drugs just not to feel it. I can of course do my daily activities and it is not severe pain.

I would like to know:

1- if all of you diagnosed with reactive rheumatism had some infection detected and took antibiotics.

2-did you have to take synovial fluid test?

3- was anything visible in your MRI? My MRI is all ok.

4-are you ok now? How long you were or have been involved with reactive rheumatism?

5- what natural remedies and diet helps you?

Wish you all health

Ambitious

2

Hi,

I'm recovering from ReA which affected my right knee pretty badly in May.

1. Yes, I had an upset tummy for a couple of days after which my knee started swelling accompanied by low grade fever. I was under treatment for IBS symptoms. My gastroenterologist put me on antibiotics for the stomach infection and sent me to an immunologist.

2.Yes, synovial fluid was tested. Showed inflammation

3.Didn't do an MRI

4. I do have a stiff knee after a long drive or periods of inactivity. Nothing too bad. I was given exercises to do at home twice a day. It's been nearly 5 months.

5. I ate a gluten free dairy free refined sugar free diet with almost no processed foods. I took curcumin capsules daily along with homeopathic treatment. I think these two in combination normalized my blood work. The immunologist was surprised at that. He asked me to stay away from raw salads, juices etc.

I live in India and I was lucky to get diagnosed within a couple of days of my knee swelling.

3

I forgot to mention. The immunologist prescribed NSAIDs and high dose paracetamol. I was on them for nearly 8 weeks

4

Hi Ginaji,

Thanks for sharing your your experience. ANd glad that you feel better already.

I have few questions:

Did you take this dairy free, gluten free diet only temproriely or you are planning to keep it as long as you have pain?

Did you do HLA B27 test? Are you positive?

 

5

Hi Ambitious,

My son is gluten intolerant so the rest of the family eats a low to zero gluten diet. What I have noticed is that I feel worse if I eat foods made of all purpose flour, yeast, additives, sugar etc. I'm ok with home made whole wheat foods like roti flatbreads.

I noticed that my sinusitis got better once I removed dairy. I do cheat but I feel mildly sick after a few days. So I guess I will be on this diet for a long time.

I didn't check for hla b27 though I have associated symptoms like ReA and IBS . My doctor planned to run it if I did not get any better. I believe it's more common in Caucasians. From what I read, there's nothing much I can do if it is positive. So I try not to eat inflammatory foods (like gluten).

My homeopath says I have a pH imbalance which will weaken my immunity and hence raise the risk of an auto immune disorder.

Hope you feel better

6

Dear Ambitious,

Alas, I have lived with RA for approximately 20 years - living as an expat in Jakarta supporting my husband in tenuous circumstances; eating from warungs - we all as a group over the year experienced multiple GI upsets.  I was 28, no ill health until then and thought the sicknesses a small inconvenience.  

My symptoms came on slowly over two to three months, could not turn my neck, then uveitis, swollen ankle on the left side and thus favouring the right leg a subsequent swollen knee (all of which were extremely painful).  I did not want to bail out back to Australia so I kept on until I was completely bed ridden and unable to chew as one side of my jaw was affected - so could only suck fruit.  

Finally and thanks to Qantas, a wheelchair & straight to Royal North Shore Hospital Sydney for seven days I was diagnosed with reactive arthritis.  I had never heard of the syndrome and being adopted had no familial "heads up" about any auto-immune predisposition.   I had a two knee aspirates, one was done well, one was bloody painful.  No infection or bacterial infiltrates.  Bloods showed mild aneamia, high white cell count, high platelets, raised CRP and ESR.  I had a bone scan which showed up inflammatory action in my back around the thoracic 7-8.  I do not believe an MRI would show anything as the damage to joints and bony structures comes later.  

So, a few months course of weaning prednisolone and started on sulfasalazine with rehab.  My inflammatory markers came down and my life picked up again but changed forever.  I am HLA B27 +ve which can be telling for RA prongnosis, which for myself has been difficult.  

To recall my ankle and knee involvement 98% resolved.  Occasionally, I can feel some mild ache in those joints.  The back pain in the thoracic region was very troubling for approximately 7 years.  I could not lie either on my stomach or my back for any period of time, having to lie on my side.  My bladder is affected and I always have microscopic blood in my urine, no pain on micturation but sometimes on flare up a sickening dull burning pain.  

I have done little in the way of good to relieve my condition and actively imbibe regular and too much alcohol, which I am sure cannot help.  I went of the sulfasalzine as my inflammatory markers were at baseline but the pain still remained and the drug is liver toxic combined with alcohol.  I usually after a viral cold get uveitis - about twice a year.  Easily treated with steroid drops

As I get older I know that I have to get a proper GP and organise my health and well being.  I at this this time are the most pain free I have been since infection and can credit this to a high dose of venlafaxine 300mg daily.  However, the greatest burdon of this inflammatory condition is chronic tiredness [don't laugh as this is no doubt enmeshed with alcohol and SNRI use as well as RA syndrome].  And yes RA if it does not resolve as an acute condition is best described as a syndrome.  

I wish you well with your situation.  Do all you can do to manage this early and quickly.  Fond regards CaitB52 (I am now 48)

7

Dear caitB52,

Thanks for sharing your story, it helps so much to see what others have gone through and what has been helping them. I have been overally better and I will share shortly below this descussion an update about how I have been feeling and what medication I am taking.

Take care!

8

Hi,

I just want to update my situation.

I have been taking methotraxate 7.5 for 3 months (one month break after first months). 

My symptoms have got much better, I am gaining more flexibility in my knees and I am doing water aerobics (which I find it really good for my conditions) and I feel the knee pain less often compare to 2 or 3 months ago.

since last month my hair is falling 10 times more! it is huge hair fall! I think my hair is already half of what it used to be, but doctor tells me it will grow back when I stop taking the tablets.

My knees are clicking really loud and doctor says there should be some mini damages to my knees and that's why. But she says it should get better gradually.

Unfortunately lab lost my HLA B27  test and I had to re-do it, I don't know yet if I am positive (hopefully not , I will know in a week.

 

9

Hello,

I am pleased to read about your resolving condition & hopefully you will be able to come off the methotrexate when better - it can have some alarming side effects.  It sounds like you are on a good trajectory to recovery. 

Do not be (overly) alarmed if you do indeed carry the HLA B27 antigen as this autoimmune defect positively protects against viral illnesses like influenza as well as effecting a latency in HIV development to AIDS.  Actually, it is an interesting antigen.

You look young in your photo and no doubt your hair will grow back more luxuriously when finished with the methotrexate.  All the best, look foward to hearing your news.  Take care - regards Cait

10

My daughter has been diagnosed with reactive arthritis. She feels extremely tired. Any idea what she can take to help. The pain and inflammation to her feet is under control since taking sulfasalaine but the tiredness is greatly affecting her quality of life.

11

My friend got this after an unprotected sexual encounter. He has had it for decades now. I used to beg him to get on antibiotics and send him many research papers about how it is likely caused by hard-to-detect chlamydia infection in the synovial fluid. I begged him to travel to see doctors who know about this, since he could afford it. He didn't listen and just kep taking anti inflammatories. Now, it is 30 years later and he has developed a blood clot in the same leg that was was effected by the arthritis. He has to wear a stocking and take blood thinners.

12

Hi Cait,

Thanks for this info, it was really good and I could relax a bit and worry less for the test. I got the result though today and it is negative anyway.

I hope my hair does grow back it is quite depressing to see it like this, although I am more concrned at the moment about my health than my hair at the moment.

Unfortunately last week I was feeling more pain, and still it is hurting, hopefully it just goes away all soon.

 

13

I am sorry to hear that. 

I still don't know how did I get RA, I did teh test for chlamydia and it was negative for me.

14

my friend had all the tests too and they were negative but this is a really hard to detect infection. please look this up on pubmed.

there are many bacteria that can cause this and combination antibiotics could help you. please do more research!

15

I am quite hopeless there, doctors are not willing to test everything(if is paid by insurrance) and I am not the person who knows what should be tested.

I was told they cannot see anything in my lab tests becasue maybe the infection whatever it has been is gone already.

Honestly I have read so much I am going crazy already.

Thanks for sharing info anyway I will keep that in mind although I don't think my case is connected to chlamydia.

16

Hi...I first started with RA 19 years ago when my son was 2 months old, came on overnight after the Flu and effected mainly my knees and elbows....it was excruciating, I got stuck in the bath once as I couldn't pull myself out!!..it was short lived, thank god.....last November I was in bed, with the flu, during that time I started with acute shoulder pains,both shoulders, symmetrical throbbing, burning, stabbing and my upper arms feel like they've been used as punch bags, can't sleep...extreme tiredness, loss of appetite, weakness down the arms. In January this year I developed a kidney infection and a lump in my armpit....I've just been to see a Dr at the hospital today and he says it sounds like the RA is back due to the Flu caught last November, as X-rays taken today are clear and no visible problems with my joints ....4 months this has been going on, and in all honesty is the worst pain I've ever experienced!! He's referring me to a rheumatologist...that's my story in a nutshell xx

17

Hello Ambitious,

Answer to #1 is I was diagnosed with C Diff took several rounds of Flagyl.I actually didn't get diagnosed until a month

after symptoms started due to first stool specimen came back incomplete from lab and second negative.It took a colonoscopy to diagnose pseudomembranous colitis.The spores have toxins in which damage the colon.Thr day after colonoscopy it started with which I thought was pink eye that I probably contracted from the surgery center.Also left knee was painful,then started swelling and more as the days went by. Could not bend it to go down the stairs or anything ,very painful.Next week went to right eye.

#2 Had synovial fluid drawn and showed nucleated cells were high and off the chart.Was sent to infectious disease Dr.by an orthopedic surgeon thinking it was sepsis,it was not.Then right ankle became swollen to the size of an elephant,never experienced so much pain in my whole life .By the time I was diagnosed from an Rheumatologist it had been a month and 2 weeks.She aspirated the ankle and it was nothing but blood bleeding into the joint.

#3 She did not order an MRI but did 36 X-rays from shoulder to feet.She did say it would take some time to tell on an X-ray if there was any bone erosion.The X-ray showed of course inflammation of the soft tissue,some loss of bone in my knee,left and right lung apical plural thickening which is scar tissue from inflammation.Had an chest X-ray a few a couple of months before I got sick and was not present then.

#4 Unfortunately this started a year ago January,and I'm one of the small percentage that still suffers with symptoms.I too am on Methatrexate and just got the dosage increased for the third time 20 mg.weekly.That's the highest orally my Dr.said,next step injections.It is now affecting the opposite ankle and Achilles' tendon with excessive swelling.Around spinal cord too the pain is getting worse there.

#5 I do take multivitamins and vitamin D ,which is

recommended since excessive steroid use has caused osteopenia,pre cursor to osteoporosis.Have not tried any other natural remedies as far as herbs or anything.Diet,I need to work on,I have gained 15 lbs. from the steroids and months of being bedridden and have yet to loose it.☚ī¸I had to buy a new wardrobe.I will say the pain is nothing like it started out and is better.I do need to start back exercising and push myself to do it.

I apologize for the lengthy response.I hope you can find some relief and get some solutions.😊

Angela

18

Hi ginaji, I don't know who told you that if your HLA B27 positive is a diagnosis they don't know what they're talking about just like with ankylosing spondylitis which is one of the spondeo arthropathies as reactive arthritis is one of the spondyloarthropathies there are many people that are HLA B27 positive that do not have reactive arthritis Etc just because you might be HLA B27 positive is not a diagnosis now you could also be HLA B27 negative and have reactive arthritis in other words a lot more needs to go into your diagnosis then just a genetic blood test for HLA B27 good luck

19

Hi,

My husband has had ReA aka Reiter's Syndrome for 27 years, since he was 29.

It was brought on by dysentery caused by a dental visit. 

His symptoms were typical right eye was red and had pressure, 2 swollen knees (like balloons). 

At the time he was diagnosed the Dr sent him home with Naproxin.  

The Dentist treated him with numerous antibiotics. 

At that time in the 90's there was less known about the disease and no internet to research for any hope of relief.

My husband who was an extremely fit and active athlete had lost about 30 pounds and could barely walk. He was completely crippled by the disease & would have to shuffle to walk. When he got home from work in the evening his only relief was a very hot bath.

His first Flare up lasted about 6 months. Miraculously it disappeared in one day, after he ate a bag of dried apricots treated with sulfur dioxide( he attributes it to curing him).

He didn't have another flare up for 20 years until his parents were both in ill heath. He had quit a bit of mental  stress at the time, we think the stress and acid reducers such as Prilosec might have brought his ReA back.

This time he endured the pain as long as he could until a friend of ours helped me get him in the back seat of the car laying down of course because he couldn't bend his knees, He was green. This day is still fresh in my mind.

He really didn't want to go to the hospital because he knew they really couldn't do anything for him.  A Dr looked at him said yes it is Reiter's Syndrome and sent him home with a set of crutches, Vicodin, & Naproxen.  He took one Vicodin and threw them away, he said it had the effect of drinking a case of beer without the bloating, he said he could see how it was highly addictive.

His ReA has returned off and on since then, usually when he is under alot of mental stress or has another illness of some sort. It can be just a stiffness to debilitating. It has traveled to every joint in his body.

He has the HLA- B27 gene -

Our oldest son which is 28 has since gotten ReA from a chlamydia infection. About 3 years ago, His just flared up again, we think this last flare up think it is also stress related.

Our nephew was age 11 when he was diganosed with ReA

And his 2nd cousin was diagnosed at the age of 21 with ReA

We know it is genetic and runs on his mothers side of his family, all males, but we don't think any of his relatives had ever been diagnosed before he had been.

For anyone looking for answers, I wish you luck. 

What we do know is that flare ups are usually cased by stress whether it is physical or mentally induced.

A definite trigger is Ant Acid medications.

My husband seems to think antibiotics could be a cure, but we have yet to find that treatment.

If anyone has any insights to anything I have mentioned I welcome suggestions, comments, questions. I know what a painful and discouraging disease it can be. It helps if there is support.

20

Thanks for sharing your stories so far.

I have some update about my status. After 8 months of getting methotrexate (10 mgr) I stopped taking them, I already felt a lot better. It is almost 9 months that I have stopped it and my knees have been ok since then. I had a huge hair fall (although I was taking folic acid) while taking methotrexate, but that stopped immediately after I stopped medication.

I did water aerobics to gain back some muscle strength and it worked well. My doctor told me I should be careful in exercises because my joints (specially my knees) are the week spot now.

So I am telling this to you now. I was not careful but you, please be more careful.

I was rushing out with heels and I twisted badly my ankle. It is almost 4 months and it is still not fully healed.

So have that in mind and be more careful about yourself specially knees and ankles.