So lovely to find you. I’ve had PsA since I was 19, diagnosed since 21 now 35. I’ve had 2 hip replacements and last year for v poorly with flare up ?septic arthritis in wrist (diagnosed post when went to consultant and he said 'yeah your wrist doesn’t move - you probably had septic arthritis) and blood sepsis. As I put on my profile it’s a bit of a game changer. I am a single parent (2 lovely kids) and I work (having to reduce hours) I have managed this disease by living with denial but can’t do that now. I’m looking for a PsA specialist in the Uk for some advice. Willing to try anything - determined to enjoy my days even when in pain and loosing function.
Again - glad to find you all. Looking forward to getting to know the space. I’ve never belonged to an online forum so please excuse newbie faux pas and direct as necessary.
Hello Rachel .... we're delighted to have you and don't worry about faux pas' we all make them, even us oldies. The only thing I remember anyone getting bent out of shape over was a member who always posted using CAPITAL letters ... which apparently (so those in the know told us) is very rude and shouty in an online context. What I would say is could you be Rachel2 or use an initial. We have another active member Rachel and I can see that getting confusing.
Anyway I really wanted to reply about UK specialists .... I go to the Royal National Hospital for Rheumatic Diseases in Bath that has a specialist PsA team and another is in Leeds. That's not to say there aren't other good rheumys around but these are the two study/research centres of PsA excellence. And under the NHS Constitution 'Right to Choose' it's straightforward to get your GP to do you the transfer of care referral.
Happy to answer any questions you have.
Thanks Jules - yes will update profile. I found the bath consultant on google - went to my GP and she wondered about someone in London although couldn’t recommend anyone - I don’t find my GP v supportive (dream of a style GP relationships if they ever exist) Am I right in thinking I can get referred to Bath on the nhs or would I need to go privately?
Yes, you can get referred under the NHS. Under the Consitution you have a right to choose a specialist consultant for your condition and if you ask your GP to make that specific referral they have to do it.
When I went through this process I went down to Bath for a private appointment initially, a second opinion if you like. I came away with a helpful and informative letter suggesting some things to follow up with my then rheumy team and GP. My GP was (and is) great but my rheumy team continued to bomb ... so I simply informed my GP that I was exercising my 'right to choose' and I've not looked back.
As you already have sufficient damage from PsA that by the age of 35 has necessitated two hip replacements I'd stick my neck out and suggest you deserve and need your care to be in the hands of the best of the best asap.
Great. Thanks for the advice - I will get on the this week - road trip to bath fingers crossed my consultant has always been sympathetic and it often feels like I’m an anomaly to my GP so I don’t want to loose support in my area and it would be a disaster if I lost the humira. I went to my GP last wed to say I was hitting a brick wall with pain and managing my life and literally got a blank face - referral to pain clinic for gabapentin/cbt - neither of which feel like the right fit. I’m going to tai chi tomorrow - in the other part of kent these classes are on the nhs for managing chronic pain. Would like to stop this disease though - am loosing joints and the thought of being the bionic woman is not so funny at the mo.
Really appreciate the advice
Welcome Rachel180! From one Rachael to another Rachel this site is amazing! Sounds like you have had a ton of experience living with PSA but not enough support getting through it or the care you deserve. Looks like you’re already getting some great direction and being here in the US I am little help in that area but I wanted to say hello and look forward to getting to know you.
Hi Rachael. Thanks for your message. Looking forward to getting to know you as well. What’s your story been with PsA? Soooo glad to have you this site!
Hi Rachel80, and welcome! You're doing a great job communicating on this online forum! I'm still embarrassed how inexperienced I was and neglected to acknowledge feedback to my intro. I was shocked when I realized how understanding and helpful the people here are and how they helped me realize how serious PsA is and how necessary the meds are. I didn't expect that, and IDK how I'd be doing if I hadn't joined this group!
Glad you found us and looking forward to hearing more from you! It sounds like you have a good attitude despite all you've been through at only 35!
Thank you for the welcome and encouragement Grandma J. Really appreciated.
Hi Rachel80. Welcome! There is a lot of amazing information on this site, and the people here are simply wonderful
Hi rachel80 - I’m a Brit but living in canada so no help at all with a good specialist … Everybody here is soooo nice and very helpful! I’m a relative newbie so can only offer limited advice but will chip in whenever I can. I love your attitude - I must admit I’m not quite there with the positive thinking - some days I’m good - other days not so much - but I’m trying! Are you on any Meds currently??
Hi Rachel80! Good to 'meet' you!
So you may be off to the Bath clinic? I phoned them once, just making enquiries on behalf of someone else, and was blown away by how much information the receptionist and consultant's secretary gave me and how friendly they were. Seemed like a good omen especially in addition to the positive patient experiences I've heard about.
I hear what you say about weighing up local support v. looking further afield. If you were to transfer to Bath that might not make any difference to the support you get locally. I sought a second opinion and ended up seeing a rheumy in a different county, different CCG. There's an efficient flow of information between my local GP & local dermatologist and my rheumy and the county I live in funds my Humira without quibbling.
Good luck, look forward to hearing how you get on.
Hi Aspyn thanks for the welcoms. Yes my experience of this site has already been amazing
Hi Golfnut. How are you? I’m currently on Humira and will take codydromol for pain but find that it wipes me out so I can’t drive/function at work or with kids. Hopefully will get some changes made.
Hi Sybil. Nice to meet you too. Thanks for your reply. That all sounds interesting how everything joins up for you between the different health professionalso. I left a proper rambling message on the rheumatology helpline which the nurse picks up on Monday and she called me back y day - a new nurse who used to work at Kings and I have an appointment next Wed. She was talking about a biologic I hadn’t heard of that’s just been licensed for PsA - a tablet not injection… Anyway she seemed lovely. And I have booked a private appointment in Bath at the mo - no faith in waiting lists and am feeling so desperate. I’ve got a phone consultation with my GP today so will see how I get on there. Am keeping my fingers crossed. It all feels like a lot of work when I’m not feeling great. But I feel that I really need to get things moving - current situation not working for me.
I’ll let you know what happens.
It is frustrating how long it all takes isn’t it? At least you seem to be on top of things and you’re right - being proactive and managing things takes a lot of effort but makes you feel better …
I’m on humira too (5 injections done) and am definitely feeling some benefit - less flares and more energy! Have also just had another steroid injection in my foot so am feeling super happy that I can walk at the moment. Do share with us what happens
Yes it is frustrating. I think May is all going to be about health appointments for me. I spoke to my GP (not someone I’d seen before) and she was very helpful in making referrals for me. Pain in my left shoulder now as well. Always symmetrical with me. Does anyone else have that?
Glad Humira is working for you Golfnut. That is great news.
I’ve got a couple of medication questions. Not sure if this thread is the best place to ask but how many steroid injections to you all have and which ones are into joint and which are systemic and hat experience have you had of oral steroids?
Also has anyone started aprimilast?
You may get more answers asking your meds question in a new discussion but here's my response:
Two intra-muscular depo-medrone injections: first one when I was diagnosed made me feel great for two days (bit like a rat on crack!) but the second one didn't help anything at all. These are seemingly more common in the UK than US. My understanding is you're limited to three/four a year.
Four intra-articular (one included irrigation of the subacromial bursa in my right shoulder). No symptomatic relief at all in my toe or knees but it was FANTASTIC for my shoulder and the bursa.
Oral steroids, I tried 10mg a day of prednisolone but stopped at 10 days as it wasn't helping.
Steroids of any kind, due to the long term risks and side-effects, are to me an emergency crisis treatment. They can be good when you're in a gap between treatments or have a particularly troublesome joint they can deliver relief.
Quite a few people have now tried apremilast, you can search previous discussions for Otezla (the brand name). Mod Jane wrote a good post about her experience with it. Happy reading :-)
Just chuck it all at us Rachel! I can have a go at the steroid question. I had steroid injections in both knees the day after I was diagnosed, when they were very swollen, stiff & painful. They loosened up a bit and the pain was more bearable. At the same time I started oral steroids. Prior to that little lot I wasn't going anywhere. But 3 days after the appointment we actually went somewhere for the first time in ages, a weekend in Liverpool. The joint injections had done their bit and the steroids did a bit more in terms of pain reduction and easing stiffness as well as taking the edge off the crushing fatigue.
So much depends on how things are when you have these drugs, I suppose. That was my worst ever time, so just being able to walk 100 yards and having that little bit more energy meant a lot. The steroid tablets were a short taper, 2 months I think, and started at quite a low dose anyway. Side effects were minimal.
I've had a few 'systemic' injections in my backside, 3 I think. One of those didn't seem to do much, one helped reduce stiffness & pain all over and the last one, which I wasn't convinced I needed, was amazing. I was moving pretty well already and pain wasn't an issue but after the injection everything just flowed .... the real WD40 effect.
I'm a big fan steroid injections. The knee ones were uncomfortable but it's short-term pain for long-term gain. You don't hear many people complaining of side effects when steroids are delivered in this way either.
Oh, and my PsA is symmetrical too ... though most things start on the left side & generally are worse there.
<3 thank you!!! Will look for the otezla posts. And let you know how I get on.
best weekend wishes to all xx
Just want to say I have got appointments set up for May and feel so much more supported and encouraged by your writing and your words so big thank you all.