A Long, Long Overdue Update!

Bioluminescence

Hello, sorry it's been almost a year since I last posted!

So I think the last time I posted I was living in London, struggling with uni, diagnosed with inflammatory arthritis ~ 7 months earlier, aged 20. I was taking sulfasalazine (wow, I can actually spell that right now ) and naproxen as my main medications. Feeling pretty isolated, having mobility issues and leaving the house little.

Since then I changed from my consultant at Hammersmith as I was a bit tired of only ever seeing a registrar, I thought I could get a better service and I saw little chance of getting offered a biologic. I was very glad to move hospitals and was impressed by the care. I was put on methotrexate (alongside sulfasalazine). At the same time I was put on an anti depressant (by my GP) and between the two of them and the stress I was under (university, my boyfriend moving out though a job transfer, being rejected for DLA altogether) it trigger my first ever manic episode which lasted about 2 months. The methotrexate also gave me bed mouth ulcers and I was taken off it. I was excused from the philosophy exams and was only able to hand in work from the first term.
The mania was strange because although terrible at the time, it felt good because I was pain free and able to move without a stick. At first I was delighted because I thought I was actually getting better unaware that I was just a completely different type of ill .

Over the summer I was feeling better mentally and a bit better physically and I decided to transfer courses at uni to English literature. Unfortunately, by the end of the summer I wasn't well enough to start the course and I was living in London with no family or real friends to support me. As I had failed too DMARDs I was eligable for an anti TNF inhibitor (I was also offered hydroxyquine and leflunomide at various points). I started Humeria in October. For me that was a huge milestone because it's so hard to get put on it and I was lucky I was able to do so quickly (although possibly would have been luckier if methodrexate had worked really well for me!). Once I had been put on humeria I moved to Edinburgh to live with my boyfriend.

Humeria for me personally has had a great effect on my arthritis. My swollen joint count is right down, my ESR is down to 23 (was at 85 in February last year). I can walk a bit and can physically run for a bus (although very painfully!). I've started a 4 day volunteering admin placement through project Scotland which is 10am-4pm. It's tiring going out most days but keeping busy, distracted, social and productive has done more good than harm I think. Project Scotland is really amazing and gives everyone the opportunity to have a mentor - mine is really nice and is kind about asking if the placement is too much for my arthritis and things. After being on various waiting lists since diagnosis I'm actually getting physiotherapy. At Christmas I decided to reapply for universities to do English Literature (technically I could have gone back to King's College London this September but I really didn't want to disrupt myself again and go back to a position of no support). I applied for 3 Scottish universities and so far have got an offer from Glasgow. Thing's are as always a bit of a struggle but definitely looking up.

Oh before I forget. Arthritis Care Scotland is amazing and runs Joint Potential which are weekend residential courses for under 25s and I will be going to some this year. Does anyone (if anyone's still reading after this epically long post) know of anything else like this available in Edinburgh? I can't seem to find any arthritis support groups, chronic pain groups or supportive type things. I'd really appreciate any kind of recommended resources that are helpful.

So that's what's been happening with me. The last 3/4 months have been really good and I feel like I'm starting to have a bit more happening in my life other than old arthur. xxxxx

stickywicket

Well, you've packed a lot in to your absence. I very glad things are now on the up for you

sailrib

Really pleased for you that things are settling down. Hope it continuos.

Tubby

I am just about to start on Humeria so I was pleased to hear your update on so many levels. Continued good luck over the next few months!

trepolpen

hope the anti-tnf works well for you , with Methotrexate they should give you 5mg folic acid six days a week , it helps with most the side effects from it like mouth ulcers , liver problems & hair thinning , you did not say how much they were giving you but its a good drug if you get on with it & works well with the anti-tnf drugs

barbara12

Hello Bioluminescence
Its lovely to hear from you again, blimey you have had so many ups and downs, but now things seems to be very positive for you..
The volunteering must have given you so much more confidence, good luck with the moving your meds and uni I will have everything crossed for you,and please keep us updated when you have time...x

Bioluminescence

trepolpen wrote:

hope the anti-tnf works well for you , with Methotrexate they should give you 5mg folic acid six days a week , it helps with most the side effects from it like mouth ulcers , liver problems & hair thinning , you did not say how much they were giving you but its a good drug if you get on with it & works well with the anti-tnf drugs

I should have mentioned that they did put me on folic acid at the same time (I'm also on omepryxol with the naproxyn). I didn't mean to be overly negative about methotrexate, I know it's an amazing drug and makes a huge difference to peoples lives - it just didn't work for me. The same goes with my positive experience of anti tnf (which I also have heard can become less effective over time). From the start of the diagnosis I've stayed on sulfasalazine throiughout as that has lowered my inflamation a bit over time so that's why I took it with methotrexate and now humeria. Sorry I can't remember the dose of methotexate I was on. I currently take 5 sulfasalazine tablets.

Thanks everyone for your comments

Kittkat

Thank you for the update. Seems like you have been through it but things are on the up. You are doing well. Best of luck with the volunteering!

bubbadog

Hi Good to see you after your absence, things do seem to be looking up for you which is great after some low times. Long may all the good stay with you.

Bioluminescence

Thanks for the support

How have you all been/ how are you doing at the moment?

Pippa

Hi so pleased to hear that humira has worked for you. I'm due hopefully to start this in May. I hope it works for me!

Good luck with all your studies and I hope you continue to feel better

Bioluminescence

Pippa wrote:

Hi so pleased to hear that humira has worked for you. I'm due hopefully to start this in May. I hope it works for me!

Good luck with all your studies and I hope you continue to feel better

Thank you, I hope it works for you. The nice thing about it is that its a lot quicker to show an effect than some of the other medications.