Ankylosing Spondylitis

firestar

Hi Forum people,
I have been having a really poor experience on rheumatologists and looking for some advice from others who have had problems and any tips on getting things moving.

I was diagnosed with the condition at the end of last year and started Sulfasalazine and then moved on to NSAIDs. they work a little but the symptoms keep breaking through. My local rheumy team kept messing me around with big gaps between appointments and seeing different doctors each time with different ideas so my GP recommend I go somewhere else as she had hear the local team were overwhelmed. So I was referred to Guy's hospital and had a really positive appointment and the doctor confirmed the problem said I should start on biologics and said he would look at my MRI images and get back to me.
More than 3 months have passed since despite me calling twice a week for the past 2 months nothing was happening so I ask PALS to step in and the Doctor called on Friday saying as he'd recommend I try a IV infusion of methylpredinisolone steroid first to see if it helps and if biologics will help decide if Biologics will help.
Has any one else had this prior to biologics? Or at all?
Not sure what to do now. Do I try the infusion or go straight for he biologics?
Amanda

stickywicket

firestar wrote:

the Doctor called on Friday saying as he'd recommend I try a IV infusion of methylpredinisolone steroid first to see if it helps and if biologics will help decide if Biologics will help.

Sorry, I don't quite understand this. If you mean he wants to try the jab in order to assess whether or not biologics would work for you, although I'm not a big advocate of steroids, I'd definitely go for it. I wouldn't want biologics unless I was sure I needed them. How did you go straight from sulph to biologics anyway? Normally we have to fail on three DMARDS before they're offered :?

dreamdaisy

This is the norm and you are still in the early days, plus rheumatology is one of the fastest-growing areas of NHS provision. The meds take time to become absorbed in our systems, I began with sulph, in February 2002, then other meds were added and subtracted along the way until I had my first anti TNF late on in 2004. During this time I also had fortnightly blood tests, are you having bloods done regularly? I used to have appointments every six months with the consultant, interspersed with visits to the rheumatology nurses. They have now 'improved' their systems and I will be seeing them once every nine months or so. It's not a big deal as such but there again I am eighteen years in with this malarkey.

Your symptoms are breaking through because the disease is not yet under control - it would be very unusual for you to move straight to a biologic having only 'failed' on one DMARD: I failed on various combinations of fours DMARDs. I am now on a triple therapy and don't feel any physical benefit whatsoever thanks to my rampant OA. DD

Lubs

Hi

I've had the IV steroids, they helped but only for the short term. So you will need to go onto a biologic. However, to start one of these they have to make sure you are clear of all sorts of things and you will need x-rays and tests for TB.

I didn't gain weight while having the IV steroids, it lasts for an hour or so and the rheumatology nurse administers it. It really does help, and I needed a couple of doses, for 6 weeks I think they were done every two weeks.

I'm now on infliximab and this works only for 5 out of b8 weeks, therefore I have the medication every. 6 weeks. It's a great medicine, but you have to be careful from gaining infections. The hospital should have given you reading material on both treatments.

Good luck.

justinbarrow

I have had the IV steroids and like pointed out they did help but they don't last I was told not to get to excited as they are only short term. You could be better on something like entanercept as this seems to work well for a lot of people but its still an expensive treatment and you can be susceptible to infections more often than usual.

Hope you get something sorted and feel better soon.

barbara12

Hello firestar
Sorry I cant help with the meds but I just want to wish you well with whatever you decide...good luck..

firestar

Thanks everyone for the advice.

As I have AS I have to fail NSAIDs not DMARDS (they don't do much for spines) and have failed 3 NSAIDs so eligible for biologic.

I had had problems with my local hospital so was seen for a second opinion elsewhere. When seen in March by the Doc it was a positive assessment and I felt quite good after. He said to start on Humira and I needed to have the latent TB test and he'd be in contact once he had viewed my MRI from the other hospital. He then did nothing for more than 3 months despite my regular calls to his secretary who started of nice but seemed sick of me calling (as was I) but I had no option as he was not responding. I finally got PALS involved as suggested by my GP and he called and we had a rather difficult conversation. To be honest I felt so annoyed that I had to restrain myself from being rude and was even more upset that rather that get things moving he put in a new suggestion of the steroid.

I don't really want to take biologics but they seem to have the best evidence for working. Those of you who are taking them- how much do you notice that your immune system is suppressed? When on the DMARD I was ok just a couple of long lingering colds that took longer to shift.

I hate all the waiting especially as I am on sick leave so waiting more than three months each time with nothing happening really impacts my work life and finances

Thanks for sharing you experiences of the infusion. How long would you say the benefits lasted? Maybe I could get this done before my holiday at the end of August

Amanda

LignumVitae

IV steroids vary in the length of time they are effective for - they act essentially as a massive anti inflammatory so if things are really inflamed then their impact is shorter than if things aren't too bad. As a general rule (which can be flexible) you shouldn't have them in less than three weeks so that implies they should be effective for about that long. Sometimes one steroid shot is enough to knock a flare down and sort you out for a while but that depends on the flare, where you are up to when you have it and other variables. I realise that's a bit of a 'how long is a piece of string' answer but so is the length of time a steroid works for.

firestar

Thanks for the quick reply
That is helpful and I guess it is individual but it is looking more tempting to give it a try.

stickywicket

I do understand the difficulties of waiting when it impacts on your work and finances but, in my experience, arthritis of any kind always involves a lot of waiting. We wait for appointments, tests, test results, medication, for medication to work (or not) and then, if it doesn't, we start the whole merry-go-round again. Waiting is difficult for all sorts of reasons but I think most people on here would agree that getting anxious or angry only makes things worse. Quite literally.

I've not done biologics but, being on meth, I do have a suppressed immune system. I've never noticed it being suppressed but I do my utmost to keep away from anyone with a cold and I employ anti-bacterial gel and handwipes after being in public places. I don't think I catch more colds than the next person but those I do get are more likely to turn nasty on me as they have already got a hold before our immune systems do anything about them. Remember to have your annual flu jab, not have any live vaccines and avoid anyone with chicken pox.

As with all arthritis treatment there are no guarantees. Some will be great on one med which will do nothing for the next person. As for having it before the end of August - you're rushing again Maybe you can and maybe you can't. Rheumatology departments are very fast-growing ones and so waiting lists can be long. My advice would be to try to relax and go with the flow.

Lubs

Hi,

Like everything in life there is a risk. With biologics the risk is infection. I'm a secondary school teacher and any child who is unwell in my class is told by me to sit towards that back of the room. I know it's rude, but I also know parents will send in their sick children to school. But at the beginning of each academic year I tell them about my suppressed immune system and if they are unwell they should let me know! No parent has ever complained!

The only good thing out of the last bird flu epidemic was the school placed boxes of tissues and antibacterial hand wipes for teachers to give to the students when they started to sneeze!

As for becoming unwell - well I have had viral meningitis in 2008. Since then I've had a serious bacterial blood infection, one that is normally found on our skin, in 2010. The problem was made worse when I was given a drug that I was allergic to (but I didn't know it at the time). Both times I was really stressed in school, I had just finished teaching my exam classes and the last one my management team insisted I mark over 120 A level pieces of coursework (each one taking an hour or so to do, not to mention checking if they copied the work from the internet), so I was very stressed. This affects our immune system which means we are more susceptible to infections. After the last one I asked to come of the course, which they did not like, and since then I've had to leave that job!

Now, I'm off work - this has been the longest period, more than both illnesses put together! But what I've learnt is I'm not going to kill myself for these people who really do not care for me! Yes, the students care and that's why I would be in work before the head-teacher and leave after him, but I didn't get paid half of his wage! They have slowly destroyed my health and faith and they know it.

Don't over think it, if you can get the steroids to help you in the short time, my advice is do it. Biologics are also hit and miss, you will be started on the cheapest and then when you fail that one you move on to the next one. This is the way it works! But they do work, you have to find the cocktail that works for you!

Good luck
Lubs