Info request

[Stephanie6637]

I have just been diagnosed with advanced Ankylosing spondylitis and am waiting for an appt with a Rheumatologist wich is supposed to be an urgent one. Am I on the right forum for AS or is there another one?. Thank you.

[Gnarli]

There doesn't seem to be a specific Ankylosing Spondylitis forum on Healthunlocked, unfortunately. There are several members on the NRAS forum you've contacted with your question with AS and several very well informed members on such matters who may well be along soon to offer a helping hand or a friendly listening ear. These inflammatory arthritis conditions come in many different, but similar, forms. Wishing you well

[Stephanie6637 in reply to Gnarli]

Thank you for your reply. I am sure I will have questions at some point.

[oldtimer]

There is a national society in the UK: nass.co.uk

You would find helpful information there.

The local branch here have a session in the hydrotherapy pool in an evening which is a great help to people with AS (who need regular exercise).

[Stephanie6637 in reply to oldtimer]

Thank you for your reply I will have a look on the website.

[charisma]

Hi Stephanie

Sorry to hear about that condition causing you pain.

The term can be used to refer to conditions that might have different underlying causes eg from osteoarthritis or rheumatoid arthritis etc.

Wishing you all the best, and a timely appointment that might bring appropriate care.

[Stephanie6637 in reply to charisma]

Thank you. I have pretty much been left to find out about it myself. My GP and orthopaedic consultant told me I had it but neither gave me any information about it. Hopefully the Rheumatologist might be more informative.

[lupus_01]

I have AS. My rheumy asked me to join NASS plus i look at this site. I know a few people were originally diagnosed with RA but got changed later to a different diagnosis so its worth looking at this site and asking questions.

[Dicorn]

I was diagnosed with AS and after taking several oral drugs MTX and Sulphasalazine, which didn’t agree with me, my Rheumatologist arranged for me to be on weekly injections of Benepali (Etanercept) which has helped me enormously. Unfortunately, getting on the injections does not happen overnight. Good luck!

[Stephanie6637 in reply to Dicorn]

My Orthopaedic Consultant said I need to see a a Rheumatologist urgently as I need to be on Dmard drugs my GP says it could be 3 to 6 months. I can't take Nsaid's due to a heart problem and the painkillers I am on doesn't even touch the pain. I guess the next few months won't be pleasant.

[Dicorn in reply to Stephanie6637]

Yes. It can take that long before you find the right drug that suits you. I have arrhythmia and on blood thinners so I am not able to take certain painkillers. I was lucky, I found the right rheumatologist who seemed to understand my problem and managed to fast track me to the right drug. You will get there.

[Stephanie6637 in reply to Dicorn]

Thank you. I have atrial fibrillation wich now under control following two cardiac ablations I am on a blood thinner so I am restricted in what I can take. I told my GP that the Orthopedic Consultant said I could take Naproxen she said " No you can't". Stuff I have read so far says it's important to get on correct meds asap to prevent or slow down any further damage and help with the pain yet it doesn't seem to happen in reality.

[Dicorn in reply to Stephanie6637]

I beat you, I have had 3 ablations. Now my arrhythmia is under control as well. We know we have to keep off NSAID’s but I found co-codamol 30/500 and co-dydramol helped a little. They are on prescription. I would keep off Naproxen as it has had bad press recently.

[Stephanie6637 in reply to Dicorn]

My GP said no way are you taking them and then reeled off a list of side effects some of wich are very worrying.

[Sarahg62]

Good morning. I am in the same boat. Have had RA for 39 years, and now rheumatology think I have AS too. The discs in my neck been fused for years, but I now have fused SI joints too. Looks like another change of medication for me then. Oh the joy.

[Stephanie6637 in reply to Sarahg62]

Hello I have problem with 3 joints in my neck wich are very painful and restrict movement. I already have some partially fused vertebrae in my back wich are also causing a lot of pain. I think sometimes they don't understand how bad the pain is and what effect it has on quality of life.

[Sarahg62]

No, it’s hidden isn’t it. I do get very fed up with people telling me how well I look, and don’t actually believe I am in pain 😡😬

[Stephanie6637 in reply to Sarahg62]

I had someone say to me recently " I don't believe you are as unwell as you say you are". I was so annoyed that I didn't rep!y but maybe a day in my shoes might change her mind. I find I am tired all the time and the simplest things exhaust me shopping is a nightmare.

[Mmrr in reply to Stephanie6637]

My rheumatologist called my GP saying she didn't believe I was as unwell as I said I was. I had over a years struggle trying to prove I was Ill.

The rheumatologist retired, I raised a big challenge with my new one, was re MRI'd , bloods etc and now have a diagnosis of seronegative rheumatoid arthritis and am on biologics.

I have a letter from my new consultant saying, but stopping short of apologising , that my treatment had been 'sub optimal'.

If consultants behave like this, we have little chance of understanding with the general public.

But I take no nonsense from any Dr now, none, everything they say and do is recorded, scrutinised and questioned, researched and questioned again. I'm satisfied with my care now.

[Stephanie6637 in reply to Mmrr]

Hello it's important that we stand up for ourselves. My GP is excellent but I know she is limited in what she can do. It's so frustrating tho that while you wait you get worse.

[Seaberry in reply to Stephanie6637]

That is one of the saddest and hardest things to learn to deal with. You are someplace and people are saying how wonderful you look and you barely know how to respond. Or (I have RA) they say they have arthritis too and a warm bath in the morning really helps them. Heck, I cannot even get in and out of a bathtub on my good days. This is a good place to hang. Everyone will understand have your back. It is also hard because once you get your appt it may take months to get the desired effect from the best drug for you. Stick with it. Be good to yourself. Things can be much better

[Stephanie6637 in reply to Seaberry]

Thank you for your reply. I am having to move because I live in an upstairs flat with just a bath wich I can no longer use. I said to my GP that the Orthopeadic Consultant said that once I am on the right medications it will make a difference she just shook her head and said we will see. My GP is excellent so I do trust her. My Hands have been really painful today. Went shopping and had to come home after a while as my back was very painful then I struggled to get up the stairs. Being like this is awful.

[Sarahg62]

Unbelievable really, but not unexpected sadly.

[Seaberry]

I feel your pain, just in other body parts. Your current inflammatory process can probably be slowed down significantly which should help immensely. I think the “we’ll see” part comes from the fact that damage that has already been done cannot be reversed. We have actually 2 pains to deal with. The pain associated with ongoing inflammation. And the pain from the damage in the joints. Oh yes, and the 3rd pain is docs who make comments like that without being specific so one can only guess at their meaning. When your doc makes vague statements like that, do not be afraid to ask “can you explain specifically what you mean by that?” If you have a difficult time doing so during the pressure of a visit, get a friend who is pretty assertive and would speak up on your behalf to join you at your appointment.

[Hidden]

Hi, I have AS, diagnosed almost 2 years ago. This is the forum I look at on here as there are others on here with AS. If you join NASS (it's about £22 a year) you can access the member forum on their site. There is also a page in Facebook (ankylosing spondylitis support group UK) which has some very knowledgeable members so always a good place to go with questions.

I've been in cimzia for about a year now. It has helped. I'd say if your AS is that severe the rheumy will put you straight on biologics rather than faffing about with anything else. You do have to have failed other medications but the nurses can get round that if the rheumy has decided you really need the biologics. I'm actually pretty gobsmacked that you've got a diagnosis from anyone other than a rheumatologist tbh.

[Stephanie6637 in reply to Hidden]

Hello I had an MRI on all of my neck and back and it was diagnosed then as I already have some partial fusions among other symptoms my orthopaedic surgeon is really good. I can't take anti inflammatory drugs due to a heart problem wich limits my options. Hopefully I won't have to wait too long for an appointment.