The Beginning

[TaylorPlayer]

4 years ago, I fell down 3 concrete steps and landed with my hands spread out to protect my face. I didnt have much pain for about a year. Then I saw a surgeon who wanted to do ligament repair, tendon interposition and removal of my wrist trapezium bone. I had developed arthritis. After the surgery the pain never stopped. And no one would prescribe any pain medication due to all the street drug use. My family doctor retired and every clinic doctor was terrified the coroner would be coming to get them if I od’d. Yup, this what they told me. So I moved across country because my brother thought I would be able to find a family doctor. I hit paydirt. I have 7 specialists, all who are great. One wanted to redo my hand surgery but I wasnt prepared to give up another year to casts for 5 months and then physio without a solid guarantee. So I have put that on hold for now.

I was at a pain clinic and my doctor ordered RA blood tests . I was stunned.

That WAS the beginning of answers after 4yrs of failed surgery and pain.

I was diagnosed with RA a few months ago. I never saw that diagnosis coming. Stunned again.

Little did I know about it but how fast I am learning.

I never thought pain/joint swelling could be so bad.

Sitting on the sofa a few weeks ago I watched as neuropathy rolled up both hands to my finger tips. I now have permanent tingly finger tips.

When I have flares I feel like I have received a 1-2 punch in the face if it is a ‘jaw’ flare

Or I cant move my arms at all

because my shoulders are frozen

Or I cant close my fingers

I am wearing a knee brace as the gel injection I had has worn off and I dont have $500 at the moment.

And yes, fatigue. Lots of it

Each day I learn more about RA as I also live with Ulcerative Colitis.

It could be a lot worse, I still feel my life is blessed

And that other folks are dealing with much more

But this is a hefty burden

And I will not apologize

For time outs

I started on Hydroxychloraquine, then added hydromorphone 4mg, gabapentin and prednisone 25mg.

I have taken 1 prednisone tablet and then paused. I am not having flares at the moment and am really wrestling with the future weight gain (which will put stress on my joints) and ‘moon face’.

I just dont think I can go there yet. Maybe if the pain becomes that much worse I will have no choice

All the best to you and your health💞🌹

[Hidden]

note my diagnosis is Stills Disease which manifests as rheumatoid disease in my case.

I recognise your pain level. I try to deal with mine by having pain relief one day then not the next and so on, IF I can. That way it feels more bearable as I know tomorrow will be a better day.

It’s the unceasing, relentless and unremitting nature of the pain that wears me down and looking forward to day of release keeps me going.

Others will be along with useful advice x

[TaylorPlayer in reply to Hidden]

many thank you’s for reading my story and replying. I stumbled upon this group last evening and feel like I have been given a gift of information and amazing support. Wishing you pain free days that make you want to dance in the kitchen, or anywhere for a few blissful moments 🌹

[Deeb1764]

I hate moon face with a vengeance but I hate non stop pain more so you know when you might need some steroids as a calmer but ideally not long term🥰

[TaylorPlayer in reply to Deeb1764]

thank you. Yes, I may have to go there.🌹

[nomoreheels]

Hiya TaylorPlayer, welcome. You do seem to have had a long road to diagnosis. The reason you couldn’t be prescribed pain relief defies belief, what a situation when you're genuinely in need.

I'm wondering if the prednisone may have been prescribed as a bridging med, to be taken to help ease inflammation & pain until the HCQ is working as in common with other DMARDs it's not a quick acting med. Corticosteroids are also prescribed for flares though, best not to become reliant on them as they can come with quite a few undesired side effects. If it's a short course you've been given it's unlikely you'd develop moon face or add weight, long term & higher doses are usually when you have such unwanted side effects. I have what is called a buffalo hump, not particularly large but I've been assured once I taper low enough & eventually off my prednisolone it will go. I have been on pred a long while though, & deflazacort before that, only at low dose but nevertheless my body has reacted over the years.

Has the neuropathy in your fingers been diagnosed to be connected with your hand surgery? I ask as if it isn't it may be an idea to ask if it could be carpal tunnel syndrome, though usually your little finger isn't affected. 

I hope you find being here helpful. It can be particularly if you don't know anyone else with RD, or so I found when I first joined. We have plenty of experiences we can share so if anything crops up & you're unsure if it's related just ask, someone will be able to help. 😊

[AgedCrone in reply to nomoreheels]

I just had Carpal Tunnel Decompression surgery…...my thumb,first & little finger were affected …6 weeks later I can unscrew the top off my tooth paste.I am working up to the Champagne bottle!

[nomoreheels in reply to AgedCrone]

Haha! It's good to have an aim, & what better than champagne if you’re partial?! I had successful left decompression in Spain back in Jan 2013 with an uncomplicated recovery. Checked by the surgeon & replacement bandage a fortnight post op. The stitches were left in for a further week, I usually heal well but for whatever reason this incision didn’t. The nurse at my Practice removed them a week later, some had to be cut out, & bandage off the following week. It did return but bilaterally whilst on leflunomide, resolved by stopping it. I hope your recovery continues without any problems.

[AgedCrone in reply to nomoreheels]

My surgeon left my stitches in for 17 days, & they were reluctant to come out,but the nurse had a little gadget that did the trick without too much fuss. I think they put in strong stitches because of the position…I know I pulled the scar often without thinking about it.

As soon as they were out I soaked the scar with VitE oil every day, it’s almost invisible now. ..but not having the other hand done if it stays as it is…it’s just too inconvenient.

[nomoreheels in reply to AgedCrone]

That's probably it, though I had expected 10 to 14 days, not that it was a bother. I've to really look to find my scar, it's just above the first crease onto my wrist but good yours has healed so well so soon. If your other isn’t too problematic I can understand why you'd choose not have it done with not having anyone around to help. It’s the things you do so automatically that hampers you isn’t it? It was the instant relief that I was grateful for as by the time I had it done it was affecting my whole arm & shoulder.

[AgedCrone in reply to nomoreheels]

Annoyingly…although my hand & wrist are much better, my elbow & shoulder are worse…..that could indicate another surgery decompressing different nerves…but unless they get unbearable, they can stay as they are. My surgeon says I should count on 3 months until zero discomfort. …but I’m happy with the result….at least I can now brush my teeth without ‘ouching ’ & dropping the electric toothbrush.

[nomoreheels in reply to AgedCrone]

It could be the elbow & shoulder pain will settle, mine did take longer than I expected & they were confirmed as extended effect from the CT entrapment. Good you're happy with the result though, I was too as it was 🤬 painful before! 😫

[AgedCrone in reply to nomoreheels]

Yes mine was painful, but the thing I disliked most… was the fact I could never trust my hand to hold something safely.I went back to melamine crockery. I’ve got fed up with breaking nice cups because my hand just drooped & all the China fell.

I hope it does settle quickly as I have just got my Rituximab infusion date through in a couple of weeks. …& they have moved all Biologic infusions to a hospital 20 miles away instead of just 5 miles…..which if I didn’t drive myself would cost £120 in a taxi… so I hope I don’t have a wobbly!

[TaylorPlayer in reply to nomoreheels]

thank you so much for the support. My neuropathy is all 10 fingers tingling about the last inch of each finger. This was left over from the ‘flare’ I had about a month ago when I sat and watched the neuropathy begin at my wrists and travelled down my hands and ended at finger tips. It was so very weird. I dont think its carpal tunnel i just keep having ‘flares’ in various joints

The worst was in my jaw 2 days in a row. I felt like I had been punched in the face. Then my shoulders froze and I couldnt move my arms. That has happened twice. Then many other joints.

I just dont know if I should take the 25mg daily of prednisone. What if I want to stop before my doctor appt.

Any thoughts gratefully received. K🌹

[AgedCrone in reply to TaylorPlayer]

Have you had any investigations on your neck?

My carpal tunnel pain in wrist/hands & in other areas is caused by damaged nerves in my neck following spinal surgery after a car accident many years ago.

[TaylorPlayer in reply to AgedCrone]

funny you should ask. My pain clinic doctor ordered an mri of my neck in December because of locked shoulders. I quit the pain clinic shortly after. I never did hear from Imaging

Perhaps I will ask family doctor

Thank you🌹

[nomoreheels in reply to TaylorPlayer]

What were you told re your pred? Was it thought you needed to bring down inflammation quickly? If that's the intention then neuropathy will probably also be eased as it's probably inflammation causing nerve entrapment. Stopping it prior to your appointment depends on how long the course is & if you were given a taper plan because even though 25 mg isn't a high dose taking it any longer than a few weeks & you could experience withdrawal symptoms. But if the course is only for a few weeks then the likelihood is you'd have stopped taking them before your appointment anyway. Does any of this make sense?

[TaylorPlayer in reply to nomoreheels]

lol after everything I have read I understand the tapering well. I just dont know rheumy’s intention. I will call the office to see if I am to stay on it until appt in June. He gave me enough. I just want to be sure before I begin. I feel as if my body is is working up a flare. I have become somewhat attuned to the “flare monkey” that wants to torture me for humanity’s past misdeeds lol🤣

[nomoreheels in reply to TaylorPlayer]

Haha! I like your style! Don't hesitate to start them if you do flare, you'll appreciate it. I'd still do as you intend & have it confirmed whether or not they were intended for the period between being seen again.

[TaylorPlayer in reply to nomoreheels]

I see my rheumy in June. I have enough pills to last. He never said anything about tapering. At that time (late Feb) I was being slammed with ‘flares’. My guess is that he is trying to calm those down.

Medway-Lady had a good point RA is not just abour flares, but organ damage as well that scares me

I need to ask more questions

[medway-lady]

25 mcg of pred won’t give you a moon face. It’s high dose for months and especially if it’s short term to reduce the inflammation. I took 175 mcg to get a moon face and hump plus weight gain but it does come off when the pred is stopped. To be frank I had no choice it’s standard treatment for a AKI and taken for months too, but what can’t be changed is endured. So short term issue that does resolve but obviously it’s up to you but don’t forget RA is not just about joints it can affect organs and blood etc so is the short term problem a better solution than risking long term worse problems.

[TaylorPlayer in reply to medway-lady]

many thanks for the information. I dont see my rheumy until June. You consider this a low dose? If I take it for a month example then want to stop how do I taper off it? Thx 🌹

[CallMeSunny in reply to TaylorPlayer]

Hi TP……just as an example… I was given a 25mg tapering dose of Prednisone with the instruction to take 25mg daily for 7 days, 20mg for 7 days, 15 for 7, 10 for 7, and finally 5mgs for the remaining week. I had absolutely no issues at all, only positives to report inasmuch as it stopped my dreadful pain/flare by day 3 and then kept it away giving my DMARD a chance to kick in. Did you have similar dosage instructions with your prescription? If not, why not phone whoever prescribed them? Best of luck with your new pain free future!

[TaylorPlayer in reply to CallMeSunny]

thank you for the info. All the instructions I got were I could increase from 25 to 50. No tapering info. I guess I will call the office. Cheers 🌹

[TaylorPlayer in reply to CallMeSunny]

many thanks Sunny. I think I will start today and get a tapering plan in place. Be Well 🌹

[medway-lady in reply to TaylorPlayer]

Tapering is just reducing the dose so taking 20 for a week then 15 then 10 then 5 then 2 then 1 for each week but you might need not need to take for a month if your consultant or nurse advised you to take until the swelling and pain is relieved by RA medications. Tapering can be difficult but steroids are not something anyone wants to be on for a long time as they can cause serious problems and a few people on here have experienced and continue to suffer. But they can also really have great benefits in the short term. If you’ve been prescribed them it was for good reason and you are best advised by the medical professional who prescribed them. I’m not an advocate for them or saying they are great but all medications have risks and sometimes the benefit in the short term outweighs the risk in the short term especially in a smaller dose. If you still worried then. Maybe ask for a steroid injection which tapers off naturally and works really fast to stop a flare. That is just a thought but could be worth discussing?

[TaylorPlayer in reply to medway-lady]

many thanks. I will remember that 🌹

[Runrig01]

if your using pred for more than 3 weeks, you need to taper off, or you risk an adrenal crisis. Unfortunately I had steroids for years for polymyalgia, where steroids are the only treatment. It resulted in me getting adrenal insufficiency, which was only diagnosed when k had a severe stroke due to a crisis. I disagree with Medway lady re moon face, most of the time I’ve been on 10mg or less. I’m currently on 4mg and still have the moon face. Much as I don’t like it, I have to accept it, as my adrenals are 90% atrophied, and will never recover. I’m told I’d be dead in 3 days of missing doses. I also have to carry around an emergency intramuscular steroid injection, to use if vomiting or serious illness or injury. I also get low cortisol symptoms when exposed to good or bad stress, which includes nausea, lightheaded, headache, progressing to slurred speech staggering etc, and get progressively worse if I don’t take more steroids. My family are trained to inject. So I’m not a fan of people using pred when there are other options. Despite only taking 4mg I struggle to lose the weight. If I take an updose if the quicker acting hydrocortisone, like 5mg which is = to 1.35mg pred I can gain 4-5lbs overnight. Obviously that’s mainly fluid but it doesn’t fall off as quick. Sorry for the long story, but Drs very rarely warn of the risk of adrenal insufficiency, yet it’s the reason for tapering, to try and nudge your adrenal glands to start producing their own cortisol. Your body only produces the equivalent of 4-7mg pred daily, do any dose above that will result in side effects. I feel sorry for patients in the USA who are deprived of adequate pain relief. Take care 🤗

[TaylorPlayer in reply to Runrig01]

many, many thanks. You have certainly had a lot to deal with. The more I read I realize how vast RA’s touch in the body is. I had no idea but am trying to learn as much as possible. Wishing you the best health possible🌹

[greynot]

Are you ever still able to play that beautiful guitar, TaylorPlayer?

[TaylorPlayer in reply to greynot]

lol. I am trying. But my finger tips are somewhat tingly. This is the 3rd 614ce of the same woods I have had. I just love this model. Do you play🌹

[greynot in reply to TaylorPlayer]

Yes, I'm a guitarist too. When RA kicked in it manifested in swollen and painful joints in my hands, very suddenly, so I couldn't play at all until diagnosed and started on prednisolone and MTX Fortunately it's controlled now, and I can play again.

I hope your hand issues resolve somewhat so you can play more.

A beautiful guitar is worth its weight in gold! (I play Fyldes, an Alchemist and a Magician...British made and also lovely, like Taylors)

I also have a tenor guitar which works for me when the hand is struggling (4 strings and tuned in 5ths, so different chords)

[nomoreheels in reply to greynot]

We live on the Fylde & remember when Roger started up Fylde Guitars in Kirkham. I went to school there. In fact my h has a Barracuda snooker cue.

[greynot in reply to nomoreheels]

I first met Roger in his pre barracuda days, as I have a very early guitar of his. Very battered (instruments are made for playing!) We're in Cumbria (out on the coast)

[nomoreheels in reply to greynot]

Maybe less battered more well loved! Small world, & you live in a lovely part of it.

[greynot in reply to nomoreheels]

So do you!

I do think living near the sea helps to lift the spirit, especially when times get tough

[TaylorPlayer in reply to greynot]

sounds like you have a beautiful guitar as well. I am happy that your hands allow you to play when flares are absent.

My hands really have a life of their own. Since my hand surgery in 2019 and ongoing very painful recovery (the surgery failed and my thumb has dropped and wrist arthritis impacts range of motion) I have little dexterity or strength in both hands. I fling things around the kitchen or cant open the simplest of things without a tool of somesort. I am almost at the point of letting go of my frustration and replacing it with laughter. Really, whats the alternative?

I may very well, probably, decide to sell my guitar.

I also have 18 custom Native American flutes. But cant get my wrist to torque enough to cover the holes properly.

I will be trying to sell them soon.

An unplayed instrument is really a sort of negligence in my books. They were created to make music. Maybe not by me, but someone.

I wish you all the best and wish you pain free days and all the joy that brings.

Please stay in touch. Cheers 🌹 Taylor

[greynot in reply to TaylorPlayer]

I passed on my Fiddle as I couldn't get around it any more (I was never very good, so it's probably a kindness to my cats 😂). I agree with you, instruments need to be played.I have a lovely Tenor guitar, just 4 strings, which is a good friend to me when the standard guitars are a bit too much. And I'm revisiting open tunings which I've not used in decades.

Sending love ❤

[Paisley58]

Wishing you relief and that thing settle soon.

My first doc treated my flares by handing out steroids like smarties, eventually I was on a 180mg a day, over weight and had a moon face. I got over the shock, did some research and found a great rheumy. He weaned me off the steroids and didn't stop until he found the right combination. Now I only get steroids injections if the flare is deemed really bad and all else has failed and honestly it works. I hope this helps.

Sending you lots of love and light