Advice for a newbie please

Bones, joints and muscles
1

Hi, I was diagnosed with low level palindromic RA about 3 years ago, with early symptoms being mainly in hands (fairly often) and occasionally knees. Often the pain would start in one hand, then the other, similarly with the knees. Then I'd be ok for a few months before it came back. Going on like this for a while but decided not to take regular meds or accept steroid injections as it was manageable and I want to hold off as long as possible. Blood test results showed raised uric acid levels but no rheumatoid factor (last done about 2 years ago)

My hands are now regularly stiff and painful, and I seem to have no grip, particularly after resting or not moving them for anything more than about 15 mins. Over the last couple of days, also have what feels like a toothache but all over my body. Stabbing sensations in my legs and lower back, and stiff neck, elbows, knees, wrists and hands. No change when sitting or lying down, in fact it hurts more lying down than when moving.

As a relative RA newbie, I'd be interested to know if other people had these symptoms and what you do to try and ease the aches and pains, other than popping lots of pills which I'm trying to avoid still. I've kept going as normal, but struggling a bit this time.

2

The stabbing sensation sounds like what I call electric shock

pain

I was diagnosed 15 years ago.

Early diagnosis and treatment important so as not to damage the joints.

I understand your reluctance to pill popping

But active symptoms are treated with anti inflamitory and pain

killers there is some people who believe turmeric helps so this

may be an avenue you can explore. Unfortunately there is no

quick or standard fix for RA. Alot is trial an error for the

"toothache pain " you describe for me is treated with a muscle

Relaxant

3

Hi mousie14 I have palendromic arthritis too and mine mainly in my hands, I have a strange rash on my hands and my rheumatologist suggested a biopsy from a dermatologist which I had the end of last week, do you have red patches on knuckles too? My point here really is I was one of these people who never takes anything tablet wise (apart from daily supplements) but in the end I had to give in to paracetamol and Ibrufen, before my diagnosis, I was taking up to 3 lots a day and the pain was still there, not as bad but never the less it got me down big time.

I plodded on like that for a couple of months until meeting my rheumatologist and having tests, then I reluctantly agreed to try methotrexate, then was given a steroid injection in my backside, omg it worked like magic.

Then some two months later I went for my routine blood test and was told to come straight off methotrexate as my enzymes in my liver were raised, a week later the pain cane back with a vengeance and I must admit it made me remember why was on methotrexate as I wasn't happy taking it.

I plodded on for a month, back to ibrufen and pain killers, feeling miserable, then I had another steroid injection and once again it took me back to normal, I am also back on methotrexate as they like to try you twice at the Newcastle Freemans hospital so that's where I am now, I go back for a blood test this week so I am hoping it works, the good thing about palendromic arthritis is I have been told and studied it, that with some people it can disappear for years then come back with some people, others never get it again so it could be brought on by stress so who knows, also it actually doesn't damage your joints, but with some people it can lead to rheumatoid, we are all different aren't we, hope you get sorted out and don't need to go on nsaids, such an alwful disease isn't it, I just try to stay positive now and think things could be a lot worse, good luck and let us know how you get on

4

While I agree with holding off of the steroids, I do not agree with foregoing all medication.

RA is an unkind disease...allowing it to grab hold is to set yourself for a long life of permanent damage.

When RA is scteaming, RA is damaging. Working, pushng through RA pain is losing.

No one diagnosed with RA today should endure what the last 54 years of JRA has done to my body because today medication is available to modify this damnable disease.

Perhaps this will allow you to see that you are not a wimp, that you can outsmart RA, that you can live a full life, that you are a success...even when you take medication correctly under the supervision of a rheumatologist.

Rheumatoid is a dynamic disease that morphs....this is why a medication that helps today may not help tomorrow.

By observing a person's reaction to a drug, we can learn a lot about the rheumatoid in that person's body...Both Enbrel and Humira are TNF, tumor necrosis factor. Individuals whose rheumatoid responds well to either Enbrel or Humira are said to have TNF driven rheumatoid. Rituximab is a monoclonal antibody against the protein CD20. For those who respond favorably to Rituximab, we say their rheumatoid is CD20 driven.

Sometimes rheumatoid arthritis can be successfully treated with an NSAID...non steriodal anti inflammatory drug...such as Orudis, Feldene, Naprosin, Naproxin, Motrin, Indomethacin, Butazolidin to name just a few.

Steriods...not to be confused with anabolic steroids...prednisone, budesonide, methylprednisolone are three of many steroids. Many decades of study have taught us to use steroids judiciously because steroids cause unwanted side effects such as bone density loss. Today, steroids are prescribed using a burst approach...high dose fast start, immediate graduated decrease, off.

DMARDs & Biologics... disease modifying anti rheumatic drug...

This class of medications modify, literally change the way rheumatoid behaves... Methotrexate (now the gold standard), hydroxychloroquine, sulfasalazine, Orencia, Remicade are all typically oral.

Rituximab is delivered by infusion as are some of the others.

Enbrel in the mid nineties was the first DMARD. I still remember watching the television news that night with tears running down my face. Those of you who face rheumatoid today should never face the full fury of this disease. Nevertheless, matching a sufferer with the best medication to defeat their rheumatoid continues to take time. As the class of medication used increases, so too do the possible adverse side effects. Be patient and work with your rheumatologist, only a board certified rheumatologist, to fine tune a treatment effective against your rheumatoid.

54 years of severe juvenile rheumatoid has left my body permanently damaged and deformed with many joint replacements because medicine did not have the wealth of knowledge it has today.

I am grateful for all of the analgesics, NSAIDs, and steroids that made it possible for DMARDs & biologics to modify even my severe juvenile rheumatoid. Today my JRA relatively quiet. And once my rheumatoid quieted down, I forgot about the really tough times it raged.

hugs

5

Wow what a post you really know your stuff, so sad that you have had to deal with rheumatoid for so long bless you. Your post actually made me cry at the end, yes medicine for RA has come a long way now, I just worry so much about side effects, that's the only drawback, I have learnt though to take each day at a time now it seems to work much better for me, instead of worrying about the future and what I may face with this alwful disease

6

I wear carpal tunnel wrist supports when I go to bed.  I went to physical therapy for my low back pain and they gave me exercises I do for the low back that really help a lot.  Strangely, on the day I take my MTX my back really hurts that day and the next.  I found that if I drink lots of water those two days the back pain goes away. I use BioFreeze on my elbows that does a good job.  I don't know if your feet hurt but Crocs are amazing and make a huge difference.  I wear them everywhere except at work.  At work I wear Clarks.  I try to have a massage every once in a while when I can afford it.  I feel your pain and wish you the best of luck.  

7

thank you....years ago I made the decision to never be the first one to try a new medication...Enbrel was first about 1995-6...I waited until 1999 before I tried it.

Remember, these medications were used for cancer first...and they are now used for much more than rheumatoid.

So, follow closely with your rheumatologist, listen to what your body says.

You should be having blood work done on a very regular basis.

I am also closely monitored by an Immunologist who will step in if need be.

I refuse to allow this damnable disease beat me.....

big, warm hug

8

Great suggestions, Lisa!

I have been wearing Skechers mule sneakers cause shoe strings are out and so is trying to open Velcro...

Drinking water...makes me think of flushing your kidneys....

hugs

9

Thanks everyone for your feedback, really helpful. I've had Naproxen previously but found it didn't do much. Then was given hydroxychloroquin which I took for about 5 months but then decided to stop because I was worried about long term use. The thing with it being palindromic is that, like this episode, it's painful for a week or two then I can generally be ok for months (apart from hands and a low manageable level of general stiffness). I guess the answer is probably to stay on them long term and get over my worries about side effects. I don't have the hand rashes but have developed bumpy knuckles on both little fingers, wierd! Thanks for your advice, think I need to go back to rheumatologist to see if any blood results have changed too,

10

Thanks Shirlee, hope you get your hand rashes sorted out. I do wonder like you say if stress is a trigger with palindromic symptoms. On a scale of 0-10 it sounds like I'm probably right at the lower end compared to others and do hope everyone on this post finds relief from these horrible symptoms xx

11

I'm sorry you've had such a struggle with your symptoms, and thank you for sharing such good advice. I hope the medication you take now keeps your pain more in control.

One thing I find difficult as well is explaining to people how it feels. No-one else can see it and even close family don't really understand the way it feels exhausting when your hands and knees are stabbing or stuck, and your body has a toothache and if you invite me to sit down for ten minutes it'll probably take me another 5 to get up again if it's during one of these episodes!!

12

Luckily so far my feet havent been affected, although I have noticed a few times when my ankle joints randomly give way and I can't weightbear on them properly for sometimes 30 mins. Is that your experience too?

The wrist and elbow advice is good, and yes a massage sounds amazing and a brilliant idea!

13

Have you tried elastic shoe laces they come in many colours

And gives you broader choice of foot wear by swapping out your

Laces

14

   i do think it is a good idea to go back to your rheumatologist and have blood results checked again.    I also hated the thought of any medication at all for RA.    I didn't even like to take aspirin or tylenol before all this.   And I put off  any medication for the RA for quite awhile since it seemed to come and go.  But I finally accepted the fact that it was not going away and I could be making myself worse.  Didn't tolerate the MTX at all--made me very sick on just 10mg so now I started Humira.  I was so sick with worry over the side effects--the danger really of all the stuff that can happen but I took my first injection

last week.    Acceptance of what is happening and how to deal with it are important and a positive attitude is needed.   But I am not quite there every day    It helps to read what others say and do  feel supported and that we are not alone in dealing with this disease  

15

I love this idea...have you seen the curly ones....

16

I also have palindromic RA with negative rheumatoid factor. Today I am in a mild flare-up with fatigue and pain. Mine travels between the feet, ankles, knees, wrists and hands. Also some tendonitis in random locations on and off. And a new one.....inflamation of the cartiledge/bone interfaces of the lower ribcage.

It took me a few years to manage this so that I mostly feel okay most of the time. I was diagnosed 14 years ago and have managed to avoid joint damage, etc. 

I do ibuprofen with my meloxicam and occasionally do a hot bath. That helps.

Exercise is a must. you have noticed that you feel better when moving around. I do a lot of yard work and also yoga. There are several forms of yoga, talk to a yoga instructor for the best type for you. Without the yoga I would be stiffening up to the point where I could not get down on the floor and back up again without a lot of effort. Yoga is my lifeline.

Still, there are times when some rest is required. Just listen to your body and experiment.

Hope you feel better.....