New to community- struggling

Hannah_Lucie

Hi all. I have recently been diagnosed with reactive arthritis. I am right in the thick of it , it’s been almost four weeks since the onset of joint pain and swelling and I still don’t feel any better. I’m ten days into a month of steroids. Night times are really awful as I am in a lot of pain and no position is comfortable for my knees and ankles. My neck and jaw are also very painful. Am juggling different kinds of pain relief due unwanted side effects of NSAIDS and opiates. I am permanently exhausted… no amount of rest is enough. I am very emotional a lot of the time and feel like it’s never gonna get better! I’m only 33 and I can hardly walk. It’s just such a shock and I would love to hear from others who have ReA and have gotten through it. Sending love to the community xxx

Anna

Hello @Hannah_Lucie and welcome to the online community,

I understand you’ve been diagnosed with reactive arthritis and are struggling with the pain. It can seem such a long and difficult wait for pain medication to start taking effect, and it’s so understandable that you feel that it’s never going to get better. I’m sure that other members will come along to reassure you that things will get better and you will come through this.

You might find the following information about reactive arthritis useful. it talks about causes and symptoms and also has a section on living and coping with the disease :

https://www.versusarthritis.org/about-arthritis/conditions/reactive-arthritis/

Do let us know how you’re getting on.

Anna ( Moderator)

Ellen

I have a feeling our own Admin @PeterJ had reactive some years ago @Hannah_Lucie

am I right Peter?

In addition this search comprises of lots of threads on the subject:

https://community.versusarthritis.org/search?query=reactive%20arthritis&scope=site&source=community

Ellen

PeterJ

Hello @Hannah_Lucie, @Ellen

Yes I had reactive arthritis about 15 years ago. I had an allergic reaction to something which triggered the reactive arthritis throughout my body. Hands curled up, could only shuffle (used to have to plan toilet trips about half an hour in advance) slept downstairs as couldn't do stairs. I was like that for 5 or 6 weeks, but then began to get better. Had one relapse after about 8 weeks but only mild and about two weeks. So hopefully there is light at the end of the tunnel for you as well. Talking about steroids - the initial dose the doc gave me was so high that the pharmacist rang him to make sure it wasn't a mistake!

Let us know how you get on.

Peter

Hannah_Lucie

@PeterJ thanks for sharing your experience and thanks @Ellen and @Anna for the information. I was started on 20mg prednisolone which a few people have told me isn’t that high and could have gone to 40mg. I’m now on 10mg and can hardly move at all this morning. Next week am due to drop it again to 5mg. I don’t think I am any better than when I started the steroids they just give me a little bit of relief during the day but it all wears off by night. I developed my arthritis after a bowel infection. I am praying that I also recover after 5-6 weeks, just holding out hope now. I suffer with anxiety and depression at the best of times so it’s very difficult for me to remain calm and positive but am trying. X

Jock1

Hi @Hannah_Lucie

i’m currently being tested which to date ‘looks’ like Reactive Arthritis according to my consultant. Possibly related to a virus I had a year ago !!

He’s started me on a course of methotrexate and started to reduce prednisone which I’m down to 6mg a day now following 20mg a day for a month.

I’ve went through all kinds of emotions since the beginning of March due to the pain and lack of sleep and energy.

I know the prednisone can keep you awake and some might disagree but I take mine around five in the afternoon along with dihydrocodine pain killers, it at least let’s me get to sleep around ten/half ten at night. Okay I wake up around three in pain but it’s a sleep.

A friend of mine going through chemo also suggested listening to a meditation app when I do wake up at three to help get back to sleep, so I stick on my earphones and I get at least another hour and a half.

I was a very active person and this has been really crushing and there are days I can’t face anyone for fear of breaking down in front of them but I’ve leaned on my family quite heavily who have very supportive.

There are people who will listen and sometimes that’s all I need to get stuff off my chest or just off load.

Stick in there, it can be overwhelming, especially at 33 but please try to stay positive,

take care

jock

Hannah_Lucie

Hi @Jock1 thank you so much for sharing your experience. I am so sorry to hear you are going through it still after several months. It’s positive that you are now trialling DMARDs though. I hope I won’t have to fight too hard to get this when I see my rheumy next if it’s still ongoing. Please stay in touch and let me know how you are getting on with the treatment… I have my fingers crossed for your speedy recovery. It’s so awful how this disease just debilitates you so quickly and seemingly out of nowhere. For very active people like both of us are it’s very jarring isn’t it… physical activity is so important to mental well-being, like therapy or mindfulness. I have started talking therapy again to help deal with all the negative emotions and it is helping a bit. Sounds like you have a wonderful family helping you to get through this and good that you can talk to people about how you’re feeling- I am also here whenever you want to vent please don’t hesitate. It’s so good to connect with people who can relate!

I’m glad you found a system for sleep that works for you. My sleep is very broken as everytime I need to roll over it’s a whole ordeal but somehow managing 8-10 hours which is an improvement from a few weeks ago. I take regular codeine and Paracetomal now but can only take one Paracetomal because I’m a low weight and have lost 3kg in the past month which is probably mostly muscle mass. Trying to keep my calories and protein up and bits of physio but it’s hard as I don’t feel very hungry and always so tired. I also use headspace /insight timer apps for sleep like you suggested.

take care and stay in touch xx

Hannah_Lucie

Hi all. I received bad news this week. I have now been diagnosed with psoriatic arthritis by my rheumatologist (rather than ReA as initially thought) and I am starting methotrexate next week. Feeling scared about this medication and also can’t quite come to terms with the fact my life is going to be irreversibly changed by this disease and I’m only 33. Absolutely devastated.

noddingtonpete

Hi @Hannah_Lucie have a look through the following, hopefully it will help

https://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

Best wishes,

Peter (moderator)

jamieA

Hi @Hannah_Lucie

I'm a lot older than you - I was diagnosed with PsA two and a half years ago at 65. I was put on biologics about 9 months after diagnosis and my PsA is far better than it was. If my worst times were a 10 on a pain scale I'd reckon I'm now a 1-2. I'm back to walking 50-60kms a week and although there are some things I cannot do I'm able to do most things I want to.

I hope you have a good rheumatologist I think that makes a significant difference. I also quickly realised I couldn't be a passenger in all of this and needed to be more assertive in my dealings with medics.

There's a lot of good information on the VA website if you haven't search yet with many testimonies from younger people on how they are living with PsA.

https://www.versusarthritis.org/search?query=psoriatic+arthritis

I hope you get a treatment that works for you soon.

Hannah_Lucie

Hi @jamieA thanks for sharing this. I hear a lot of good things about biologics/biosimilars and that methotrexate is quite a harsh drug. I am sure the doctors just want to try the cheapest option first but I worry I won’t tolerate mtx very well. If it doesn’t suit me I will definitely ask to try something else. I am happy to hear you are walking tons! It gives me hope.

all the best

Hannah x

jamieA

Hi @Hannah_Lucie

I know what you mean about MTX but equally the combination I'm on now has allowed me to stop taking regular high strength painkillers. It's not a great choice but I felt that with the amount of painkillers I was taking most of 2021 ended up as lost to me. I recently had a reaction to the contrast agent injected into me for an MRI scan and was on high strength co-codamol for a week - I really wouldn't want to go back to that regularly.

Hannah_Lucie

Hi @jamieA I’m glad you’ve gotten off pain killers and had such a good response to mtx! so I opted for sulfasalazine over mtx and I’m one month in now, feeling a lot better it’s amazing how quick it started to get my inflammation down!! I’m even driving again, feel like am finally getting my life back!!! I still can’t bend down easily, my knees are a bit stiff and I am still utterly exhausted time still but I don’t know if that ever goes with PsA?! I’m learning to accept that I have a lifelong condition but it’s hard to know what to expect now that I am doing so much better am dreading my next flare up.

efd204

Hi @Hannah_Lucie i can relate to your story very much as I am 26 and have ReA from a virus I got in December. I am also trying to get talking therapies because I also feel the crushing negativity of having my once active lifestyle completely ended due to this virus, but I haven’t heard anything since I did my self referral. But don’t lose hope that it will be irreversible. I have also gone through the methotrexate and steroids saga, as well as hydroxychloroquine, and am now due to start biological this month and I am pinning everything on this. I can’t walk most days and have become a withdrawn and isolated person, but I refuse to accept that this is my lot! Good luck with everything let’s keep in touch, Ellen xxx

Hannah_Lucie

Hi Ellen @efd204 I am sorry for the mega delayed response…I haven’t logged in for a few weeks! How are you getting on with the biologic? I really hope you’re improving with the new treatment and starting to get your life back! Did you manage to access any talking therapy? Thinking of you . Hannah xxx

efd204

Hi Hannah. Unfortunately no joy with the talking therapy but biologists have been better than my wildest dreams. In just a few weeks CRP has gone from 98 to 7. Praise be to the NHS haha. A few weeks ago I couldn’t walk, get out of bed, or use the toilet unaided. Going back to work next week! how are you?