Hello!

anna1979

Hello everyone

I’m new to this and new to forums but I will introduce myself.

I am 38 and I was diagnosed, by a rheumatologist, with ReA on Monday after two very difficult months with joint and muscle pain following what I now think was a sinus infection at the beginning of the year. The GP did an urgent referral for me as it got so bad I became unable to walk due to the pain and stiffness in my hips and knees. Although it was also affecting nearly every other joint in my body and I felt incredibly poorly. I have been very lucky though as I only had to wait 3 weeks to be seen.

The rheumatologist gave me an intramuscular steroid injection and said I should start feeling better the next day. It has taken a little longer than that but on day 3 I am feeling so much better in that I don’t feel so poorly but still have the arthritic pain in most joints. Can anyone advise me if this might further improve in a few more days? Or if I just need to ride this out and carry on doing as much as I can but keep resting too. I was really hoping to get back to work and some normality next week if possible!

I have been very fortunate to have good health until now so it has really opened my eyes up to ‘invisible illnesses’ and has taught me a lot about how many resilient people there must be who are dealing with chronic pain every day. Thinking of you all.

Anna x


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[Deleted User]

Hi Anna
and welcome to the forum, it looks like you have had a rough road getting your diagnosis but it's good that you are now under a rheumatologist. Steroids work very differently for different people so I apologise but I really couldn't say if you will get better still. Am I right in assuming that your rheumatologist has also started you on other medication? These can take some time to kick in.
I am not sure what you mean by ReA is that reactive arthritis or rheumatoid?
Here is a link to a fact sheet about reactive arthritis https://www.arthritiscare.org.uk/do-i-have-arthritis/publications/236-reactive-arthritis
You may also find it useful to look in this section of the website about https://www.arthritiscare.org.uk/living-with-arthritis which covers a lot of areas about living with arthritis including work. You can also phone our helpline on 0808 800 4050 for more support and advice. I am sure some of our members will be along shortly to share there ideas and experience with you. Let us know how you get on and now you have said hello the place where most people hang out and chat is in the living with arthritis forum
Best Wishes
Sharon

anna1979

Hello Sharon

Many thanks for your reply and for the signposts to useful information.

I have Reactive Arthritis, rather than Rheumatoid and I have not been given any other medication at present just the injection, which is helping. Along with Zapain and ibuprofen to help with the pain and inflammation.

Thanks
Anna



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dreamdaisy

Hello, it's nice to meet you but I am sorry you have had to find us. We have another person on here, his user name is Grid, and he has been recently diagnosed with exactly the same as you (his began after a bout of dysentery and his threads are on the Living with Arthritis board on here, I think it's titled What to Expect). With reactive arthritis (RcTA is what I use) it is a matter of riding out the storm but, as with all storms, it will eventually blow itself out. Steroids (when they choose to work) are excellent con artists, we feel superb on them but when they begin to wear off we find that nothing has fundamentally changed because they do not tackle the underlying trouble, only mask it. I don't think it usual to treat RcTA with the usual meds because it is somewhat different in nature to the progressive kinds.

I am one of the more usual ones in that my arthritis will not do the decent thing and go away. I began twenty two years ago and continue to be increasingly lumbered but as I was born with auto-immune troubles it was always on the cards. I have no idea what being healthy is like but I can understand it prepares one not one jot for this dross and malarkey. Keep to a healthy diet, rest as much as you can, don't overdo things, generally be kind to yourself and your body and hopefully things will clear in a matter of months but it can take longer. You are a member of a very exclusive club - talk about doing it properly! I wish you well. DD

stickywicket

anna1979 wrote:

Can anyone advise me if this might further improve in a few more days? Or if I just need to ride this out and carry on doing as much as I can but keep resting too. I was really hoping to get back to work and some normality next week if possible!

Hi Anna and welcome from me too.

I wish we could advise on this but it really is a very individual thing. I do hope that by now the steroids are helping but I think you'll just have to play it by ear and see how you feel. Definitely don't overdo things but, equally, resting to much doesn't really help. You sound to have a very balanced attitude to this and that will help a lot.

It's true that none of us really understands an illness or disease until it strikes. Why would we, I guess?

Steroid jabs, when they work, can be great for up to three months. ReA is a bit of an oddity in Arthritis World in that it gets better but whether or not it will get better so quickly is anyone's guess. Are you booked in to see the rheumatologist again? The ibuprofen, an anti-inflammatory, might help but, as time goes on, if you find the steroid jab is starting to wear off, I suggest you try to make another appointment and, if you need the anti-inflamms regularly, ask your GP for a stomach-protecting med too as they can be harsh on the tum.

anna1979

Hello dreamdaisy and stickywicket thank you for your replies

I have spoken to the rheumatology nurse this morning and she said the injection would take around a week to work so that is reassuring as hopefully I still have some symptom relief to look forward to. She also told me that I will probably need another one at my next appointment in 6 weeks and possibly some DMARDs too. She also asked if the Rheumatologist had explained that I have some symptoms of connective tissue disorder, I assume she means the Carpel Tunnel Syndrome. Maybe there is more going on than just the ReA. It seems from my research, which I’m sure you can all back up, that it takes a while to get to the bottom of autoimmune disease. For now it’s just ReA and I’ll hold onto that.

Thank you again for the support x


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dreamdaisy

You're more than welcome, it's what the forum is here for. Carpal tunnel syndrome is caused by the nerves running through the tunnel between the palm and wrist being compressed - connective tissue disorder is something different and, I think, auto-immune in nature.

Steroid injections can be very temperamental, over the years I have had many, both into joints or my backside but only one was effective, and even then only for three months. Keep in touch, let us know how things are going. DD

grid

Hi Anna

welcome to the forum.

just reading your post and DD mentioned me on the post. Yes i can confirm the i have reactive Arthritis (praying it is) and i have had a second steriod last week.

my first one was at the end of sept 17 and pain an back with a vengence in Feb so had a good run. i did experience pain wth the steriod but nothing that stopped me doing anything.

since Feb my hip has got worst and i can feel it niggling even though i hads the steriod injection last week so not great but definatly not as bad as no steriod.

as you can see i have had this since last june and obviously been longer than the usual 6 months.

i am only taking paracetmol x 2 in the morning for this. net appointment is in 6 months time.
how long have you been suffering with this? it seems i have a long wait for the next app.
i queryied having DMards as its recommended after 6 months of joint pain but they said no i cannot go on them.

DD... from your experience i had bloods and xrays last week for the Rheumy, am i to wait for them to get back in touch or am i suppose to contact them?

Dave (grid)

anna1979

Hi Dave

Sorry to hear your symptoms have lasted for so long. How bizarre is it to be hit by something so debilitating because of a simple infection?!! It has been a shock to me.

I had a Depo-Medrone injection a week ago today and unfortunately other than stopping me from feeling very unwell it’s not done an awful lot more. Consequently I have had to get the GP to sign me off work for yet another week this week - that’s 6 weeks now!! All this started in February but within a month I was housebound and hardly able to walk.

It was the rheumy nurse who suggested I might need some DMARDs but whether the rheumatologist will agree is another matter. He told me I would feel much better the next day! They are only trying to help I realise that but living with the constant pain is one thing, when it starts to affect your livelihood it’s quite another.

The rheumy nurse also told me it could last up to 2 years which is at least helpful to know, to mentally prepare for.

I hope your injection lasts for a while and gives you good relief. Keep me updated.

Anna


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dreamdaisy

I can't answer for your area but in mine they contacted me apart from when they didn't so I had to contact them. That's a helpful answer, isn't it? Seriously, in the early days they would get in touch with me but, because patient numbers and service demands have risen, I have learned to do my own *medmin: I chase after eight weeks. DD

*medmin = medical administration

grid

Hi Anna

sorry i missed your post above daisy's.

Yeah the steroid injection definatley helped me. sounds like you have a bad case especially keeping you off work. Mines is not on the level of pain you are on.
I am not sure what steroid i had to be honest they didnt tell me. But i have not felt any ill effects from it, apart from feeling more hungry lol.
6 weeks is a long time off work and house bound. i see you have it in the hips aswell, thats probably my worst pain, feels like my leg is going to come off the socket.

how you feeling now? hope the injection is working for you. i like to keep in touch as we have similar problems. let me know if anything changes.

Daisy - thanks for info. i will wait a couple of weeks, do i phone the doctors or Rhumey secretary?
Dave

dreamdaisy

If it was rheumatology who requested the Xrays etc. ring the department / the rheumatologist's secretary. DD

grid

Hi Daisy,

just rang them and they said they have not had the Xrays even though xray dept is right next door..............pffft

dreamdaisy

Geographical location of the departments is neither here nor there, it's the demands on the system. If I recall correctly you have had very little to do with the NHS until recently - it's a revelation, isn't it? It can be utterly superb in how it responds but it is mostly a case of hurry up and wait. DD