It started with painful wrists which then moved into finger joints. My rheumatologist wanted to hit it hard given my CRP levels were very high and prescribed Hydroxycholoroquine 200mg. This all happened so quickly I guess I was/am in denial and rightly or wrongly tried to explore other ways to reduce the inflammation before subjecting my body to drugs. I was still in pain with hands and wrists but tried to control it with diet i.e. vegan, gluten-free, dairy free and sugar free! The RA was manageable until one morning woke up with an extremely painful shoulder which meant I could not dress myself,drive or do anything useful! The pain was like being stabbed multiple times in my shoulder and arm. Anyway, this resulted in a visit to Rheumy, a steroid shot and a telling off for not starting meds straight away! I felt as though I had no choice but to start the meds and feel very silly but I did not realise the impact of a severe flare. For the first time since June I have no pain in my joints whatsoever, oh the Joy! I do realise of course that this is a temporary reprieve and when the steroid wears off it may well start all over again. I am continuing with my food plan in the hope that it may well help.
Can anyone tell me how long I will continue to see the benefits of the steroid shot please?
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Ladymum
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Was it a shot in the joint, or a depot onto the backside?
I was just going to ask the same question as NettieC! Depot shots do nothing for me, but I had a shot in the shoulder for tendonitis last December and I felt like my old self for some time afterwards.
I'm not sure 200mg of hydroxy could be said to be hitting it hard. I thought starting out with 400mg of hydroxy was getting away lightly because the M-word had already come to my attention! And that was at a time of no symptoms, no damage and low ESR and CRP.
Diet can make a big difference, but it is trial and error and it seems that different things affect different people. (Vegetarian already, I dropped gluten, dairy, sugar and processed foods for a while, but reintroduced a little dairy and sugar - both mainly as chocolate bars, my addiction.) You might want to look into LDN.
Hi Em, yes sorry 200mg twice a day. So new to all this! Managing the diet better than I thought I would, but yes the thing I miss most is chocolate! Thank you! the photo was taken at the House of Lords last year with my lovely husband who has been an absolute star since my diagnosis. Will look into LDN.
Dark chocolate is supposed to be good for you and contains antioxidants. Tesco do a reasonably priced 85% dark chocolate bar, but somehow it doesn't hit the spot for me. I try to stick with it, but find myself longing for something sweeter, especially at work.
I was kind of halfway there with my diet - no meat, no milk, little processed food or sugar, drinking green and nettle teas, but being gluten-free is hard. It was the only thing I found I couldn't reintroduce. I was hopeful that in time I would be able to eat it again, but the more I learn about it, the less likely that seems.
I had one due to a flare in August, I have had a couple in the past, including when I was first diagnosed seven years ago.They tend to last between one and three months. The rheumy increased my dosage of methotrexate and, so far, so good. I have been in remission for about three years before that. I started on mtx, sulphasalazine, plaquinal and naproxen, which has gradually been reduced as I went into remission. Now I just take 15mg a week mtx and four tabs of sulphasalzine a day. So be warned you may find you have to take more drugs to get RA under control. Let's hope not. As for the diet you are trying? Just look at the history of posts on this subject. Believe me (us on here) if we could avoid taking all these drugs, we would. But I'm afraid you may find it will be about as effective as walking naked backwards round a churchyard at midnight!😏. Along with all the other weird and wonderful 'cures' that are advertised for sale. Please stick to what the Drs recommend, because if you don't you could find irreparable damage has been done to your joints. Good luck and best wishes.
Hello
I've had a few depots. They are not the wonder drug that some folks report. For me they work a bit, but not for long. But everyone is very different.
Interesting thing diet wise...I seem not to tolerate wheat products any more. Weird!
It is a shock being diagnosed, and we each have to tackle it in our own way so fair enough to explore lifestyle changes. Hope you're including exercise & rest along with diet as the three go together. None of us want to take drugs if we don't have to.
My grand plan was to start with the drugs alongside altering my lifestyle in the hope that I would eventually be able to taper off the drugs. It hasn't quite worked like that. The good news is that I'm generally in remission, but if I reduce the drugs any further than I have then I go downhill fast. The other good news is that I have no side effects from the drugs, and I put that down to lifestyle changes. The bad news is that I'm still on methotrexate, hydroxychloroquine and sulphasalazine...but hey ho, they've been working for me for 6years now.
In the early years I did have to have steroid shots every now and then, and they did their magic for about 6 weeks each time. Lovely pain holidays!
I doubt changing diet alone would help though, if I'm honest. The drugs are awful, but at least I can now walk my dog.
But that's me!
in reply to
Hi Nettie - There is a series out right now, and at the risk of too many links I'm going to enclose the first of the series. It actually talks a LOT about diet, leaky gut, dairy, etc. and it's effect on autoimmune diseases. Episode #1 This is the first of the 7 and they have opened it up again for people to watch - It's free although they do want you to buy the series. You don't have to of course. But maybe give them a look.
I gave up all grains, most sugar (including fruits), and still kept the dairy. And I feel better overall. But it seems to me with RA, that the disease is much like that line in Beetlejuice. The couples afterlife coach tells them that death is "all very personal".
I look at RA that way. No one thing works for everyone, and I also think that improvement is found one small thing at a time. I found one piece of healing when I gave up grains and fruit and another when I went back to eating meat.
Wish you the best of luck, and as others have said - wonderful picture!
I had a steroid jab in my shoulder and one in my rear end a few years ago and they did wonders. The shoulder one wasn't RA related but for problems I had and still have since I was a delivery postie. My current rheumatologist doesn't seem interested in my other general physical ailments, though. In fact, I didn't even get so much as a finger joint examination the last two vists. My diet isn't great and I admitted to my nagging dentist the other week that I have an impossible sugar addiction. But I figure that if eating a bit of sugar helps with my mood then that's going to help my general wellbeing. Life is difficult and stressful enough! I rarely drink alcohol and don't smoke so sugar is my one vice.
I've had several steroid jabs during my dalliance with Mr RA. They work for me - the relief within a couple of days is marvellous.
However they mask the pain, they reduce the inflammation - they don't manage the RA underneath (so I understand). They give temporary relief whilst allowing the DMARD drugs start their important work getting to grips controlling Mr RA.
You will find - as we all have - that it takes time and many tweaks and adjustments to gain control. It can be done though, I'm in remission again - a truly fabulous feeling. That said I've been like this before then wobbled and gone backwards again. Sadly nothing ever happens quickly drug wise, it usually takes up to three months to see real benefit from new drugs/changes and the RA path is up and down.
Welcome Jan. Having RA and othe immune problems for over 30 years, it's a balance really, on many meds but also on a low carb high carb diet, no gluten and low sugar. Feel more in charge that way, also helps the joints. Wishing you luck in your journey. Take care. X
I'm 17 years down the RA road....still don't want to accept it....but have very little joint damage .......have taken all the nasty drugs...some worked some didn't. Have just started RTX....seems to be going well.
I find an 80mg injection of Depomedrone can last up to 12 weeks...but it seems a very subjective thing. I have read here it either lasts ages or doesn't work at all. It seems a good omen that you have no pain now, but if you can bear to, keep taking whatever Dmard you are on......that will help to stop too much joint damage.
I decided years ago to go with the flow. If you feel like eating something ...eat it. If you genuinely like what sounds awful...go with it....but for goodness sake don't eat mung beans & drink cider vinegar if you hate the taste.
There is no clinical evidence that diet helps with RA .....it may psychologically help some people to stick to some sort of eating plan ...it may help to feel you are in control! But RA is for them long haul & I'm sure being happy in your eating helps you feel less stressed & I honestly think being stressed is a definite No No with all auto immune diseases.
Good luck Ladymum. You will get all sorts of honest opinions here...but in the end I listen to my Rheumy & then do what I feel is best for me......one day it's crisps...the next it's a jam doughnut !
Bon weekend!l
AC
My steroid shots were usually in the joint, and the first would last for 4 - 6 months, then the next one maybe a month. I gave up having more than one - the pain getting the shot was really intense. I'm hoping yours lasts for a long time..
I took steroid pills and had to wait over a year with every joint in my body almost immobilizing me to even get to a consultant. I am now injecting monthly with golimumab. Helps. Beware to take vitamin D3 pills and risedronate sodium or alendronic acid with that to stop osteoporosis on steroid. I was on steroid pills for 3 years until I pointed out to my doc that it was time to stop. You have to do your own thinking quite a bit with docs it seems. Went into shock on painkillers I was taking so many so cannot take any now at all. The diet helps me too, acidic foods and wines had to go completely for me. No more OJ which I used to love!! I use ginger as a spice to help the circulation and keep my hands working as could do nothing for years without screaming in pain but I kept fighting. Hands iffy at times but I have managed to release the stiffness and the clutched fist by working them with the pc typing!! Pain now a way of life in every part of my body. Tiredness is a killer. The pain is there to fool you, it is not real. That is how I look at it to keep moving.
I suppose everyone is different but when I had steroid injections in past the first lot lasted about 5 weeks and the last one only one week.
I am been on steroid pills,sulfasalazine ,hydroxychlorine and Pregabalin . the hydroxychlorine was beginning to give me back some sort of life but then told had to reduce Pregabalin so am now a mess.
I have been on methotrexate ,HumIra Enbrel and Rituximab in past
I tried gluten free but it's so hard to stick to and expensive . gluten is virtually in everything .
Pain drags you down and if medication helps you its best to take . I would of thought your consultant would of started you on methotrexate to hit it hard.Medication will only dampen it down it won't cure you so do take the medication to give yourself some help and I wish you luck.
My RD started with very acute flares, but I was very reluctant to start meds, thinking I'd manage with diet etc.....I eventually accepted Hydroxychloroquine, and it helped a little, but then I got very noisy tinnitus and bad nightmares. Ended up on Methotrex injections after a bad reaction to oral tabs. Whilst it was being sorted I had a few steroid depot injections for flares. The first 2 worked a treat for 6 weeks or so, but the last one I had wasn't so good. I haven't needed another for a couple of years now.
I am still in denial and hate using drugs, but am frightened to stop, having got back to more or less normal most of the time.. I sympathise with the shoulder flare - that's a really disabling inflammation, and so scary to go from your usual competency to helplessness within hours.
I'd say try everything that works for you without limiting your enjoyment of life (including the joy of food!)
I'm a bit late, been a bit busy but welcome Jan. I'm sorry you've needed to join us but pleased you've had so many replies & I hope they've been helpful.
I was diagnosed seropositive in 2008 & my Consultant decided to not to be too bullish with meds to begin as whilst it had affected other joints it was only my feet which were badly bothering me. He started me on hydroxychloroquine, same dose as you 400mg, but also a couple of NSAIDs & a short course of oral steroids to ease the inflammation & pain until the HCQ had built up enough to be effective.
I understand why you preferred not to take meds initially but now I guess you know why they're necessary. My thinking is once under control try seeing how you can help yourself. I eat a mainly Mediterranean diet, just basically continuing what I'd been eating the previous 7 years when diagnosed as I was living there, & it suits me. Some info you may read will say to avoid the nightshade family as it's considered they can cause inflammation but they have no effect on me, just shows how we all respond differently, same applies to the meds we take, always a idea to keep that in mind when reading of others' experiences.
I can't really give much help 're steroid injections I'm afraid as I've only had a few & mostly local joint specific but the general one I had worked a week later for a total of one day, but I got a lot done that day!! So I guess that means I'm quite well controlled, except for my feet that refuse to comply & so have lots of attention. I take MTX (injection), leflunomide & etoricoxib (an NSAID) plus other meds for OA & just supplement with Omega 3 fish oil (apart from prescribed calcium & Vitamin D).
I hope you find it helpful being here & enjoy the support we give one another, only those with the disease get it! Lovely pic by the way!
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