Hi! I'm new...

[FEARN2261]

Hi everyone, I'm new here and just thought I'd ask some advice? I have had problems with a lot of my joints for a number of years now and have Osteoarthritis,Osteopenia, and Coeliac. I was referred to Rheumatology two weeks ago as my hand and fingers have been swollen,stiff and very painful for the last seven weeks & bloods showed inflammation but didn't have positive Rh factor. I saw consultant yesterday for the first time & was a bit apprehensive as my previous gp had said I was making a fuss over nothing! The consultant asked loads of questions,did a full examination,sent me for blood tests & xrays of my hands and feet and then said I definitely have inflammatory arthritis,but it wasn't clear if it was Ra or PsA however the treatment was the same for both? She gave me a script for Sulphalazine and said I need to have bloods every two weeks,clinic in 6weeks and hospital in 4 months. No steroid injection because of the Osteopenia. I just wondered is it usual to start off on this drug? Does it make you feel awful? The consultant said there were a lot of side effects but she didn't want to scare me! Any advice? Thanks,x

[Hidden]

Hi, firstly welcome, but sorry that you have had to join us with your illness but glad that you have, we are a friendly bunch and someone will always be ready to help, even if it's to commiserate with you. Most people here have RA but I am one of the ones with PsA.

Yes, some people are started on this drug first, before moving on to others. If you look at the question page you will see that it can make your urine change colour so don't be alarmed. It can cause some headaches but only at the beginning, once the body get used to it you should be ok. Once you collect the prescription read all the paperwork attached so that you know all that could possibly effect you, but don't alarm yourself with it all, as they are only telling you the worse case scenarios. We all do it, frighten ourselves, get into a panic but then realise each one of us here have been in the same boat and have tried these drugs and are still here.

Good luck and take care, make sure you rest when you can. xxx

[Hidden]

I have been on this drug for 15 years and its been fine for me.

Have they started you off gradually? One a day, then 2 then 3 etc?

It may take a couple of weeks to get used to it, but I have been told it is one of the safer drugs.

[FEARN2261]

Thankyou! I know I started worrying when the consultant said she didn't want to worry me with the side effects! I'm exhausted,felt like it for weeks so I'm hoping some of the fatigue lifts a little. I'm supposed to pick script up from the drs today so I'll see how I get on! Thanks for replying its probably a silly question that I asked but I'm just trying to be informed & find out as much as possible! Is inflammatory arthritis classed as autoimmune? Do I need to have the flu jab do you know? Sorry to be a bother,but I suppose I have a long road ahead!xx

[Hidden in reply to FEARN2261]

It depends on the drugs that you are on, speak to your GP to see if this is one of those drugs, if it is, you will be entitled to both flu and the one off pneumonia jab.

[helixhelix in reply to FEARN2261]

Flu jabs are mainly if you take one of the immunosuppressant drugs, and sulpha isn't one of them. Just having RA alone doesn't really make you eligible for a free jab, but it seems that surgeries are different so no harm is asking!

[sylvi in reply to helixhelix]

I have had the flu jab and i am on sulpha and a load of other drugs. If you go to your dr i'm sure you will get a flu jab with no problem.xxx

[Hidden]

Hi Fearn,

Welcome to the site, I don't have any experience with the drug you are on, as I was started on Methotrexate & Hydroxychloroquine.

We all panic at the great list of side effects that these drugs can have but you have to remember that the drugs company has to list every side effect that could happen and most of us get mild reactions till our bodies accept the drug.

I have been very lucky in that the only thing I find is I am very tired after taking MTX, so I now take it just before bed.

I think a lot of people on this site have been made to feel as if they were making a fuss over nothing. When I first went to see my GP she didn't even look at or feel any of my painful joints and told me she would send me for a blood test but would be very surprised if it came back positive for anything!

Hope all goes well for you and you don't suffer any side effects.

All the best

Mary

[Hidden]

Hi there,

I'm in the same boat as you - I have inflammatory arthritis but which type is turning out to be a right old saga. I hope you get a response from someone who started on Sulfasalazine but it's the drug I'm meant to be trying next if I need an extra one. It hadn't even occurred to me to worry about it .... not that I'm brave, far from it! But I was scared stiff of Methotrexate and over 5 months later I'm on the maximum dose, I think, and it hasn't given me any problems whatsoever. Side effects seem to vary from person to person and sometimes come on quite suddenly from what I hear - I was touching wood as I mentioned the Methotrexate - but once you are on the drugs you get used to them surprisingly quickly. And there's always the option of trying another drug if the first one doesn't suit you.

All the best with all this,

Christina x

[sylvi]

Welcome fern, i'm sorry that we have to welcome you to our little group,you are here because like us you have ra. The people on here are the nicest bunch of people i have met. THey will help you,cheer you up when needed and will console you when your down and worried. We all have various degrees of this illness and we all experience different symptoms.

Take care sylvi.xxx

[Hidden]

Hi Fearn, I wouldn't worry about Sulphasalazine - it's one of the less scary disease modifying drugs many here are offered. If you are already on other drugs for your pre-existing conditions the consultant would have taken this into account when choosing your DMARD. If it isn't enough for you then they might well add in another disease modifying anti-rheumatic drug to try and reduce your inflammation but the drug you've been put on is one of the older more tried and tested drugs from this group. As Polly says you might not be offered the flu jab this year because Sulpha isn't an immunosuppressant, but on the other hand, bearing in mind you have Ceoliacs and Osteoporosis too maybe they will think it's important. You should ask anyway but your immune system is probably a bit over rather than under active presently because that's how inflammatory arthritis works. Tilda x

[shirlthegirl]

Welcome from me to, Just to really repeat what everyone has said, since i have been on this site, I have recieved so much comfort knowing there is all way someone to of load my feelings to........

Never worry about asking silly questions or bothering any of us, we are all really friendly and at some point we have felt the same way as you.

Take care shirl xx

[earthwitch]

Yes and no about the treatment being the same for RA and PsA - yes, that the starting drugs can be the same, but actually DMARDs (disease modifying antirheumatic drugs) like sulfasalazine don't usually have the same really good effect on PsA as RA. In RA they really do help dampen down the disease process and are properly "disease-modifying". In PsA they deal with the symptoms somewhat, but not always as reliably or as well. For that reason they are definitely worth trying first (the alternative being incredibly expensive biologic anti-tnf drugs, and sulfasalazine can work well in some folk with PsA), but if they don't work well enough for you, don't be afraid to report back to the rheumatologist and ask what else you could try. Also, if you have significant spinal pain, its likely the SSZ won't deal with that well, so you need to ask your rheumatologist what else you can take for that.

Yes there are a lot of potential side effects - some serious and you would have to stop taking it, and some of it just discomfort that gets better as you get used to it (nausea, etc). Make sure you do report anything unusual to your GP, and also even though some nausea or stomach discomfort might be expected, if its too bad, don't put up with it, and report that too.

Have you had sacroiliac joint xrays? If you haven't, and you have any kind of pain in your lower back or sacroiliac joint area, then you should ask about having an xray or MRI of that - signs of inflammation there would definitely confirm a PsA diagnosis.

[cathie]

Hello, welcome. You can get flu jab privately from a chemist. Ours up the road costs £12. Getting flu can make inflammation worse so it may be worth it.

I started on sulphz but it didn't do much for me. But it does work for many

C

[FEARN2261]

Thanks so much for the warm welcome and advice! I called into my gp yesterday to see if my prescription was ready (it wasn't) & asked about the flu jab,one of the practice nurses was in reception,overheard me asking & said she would do it there & then! She said I will get an invite every year for it now,so that's one less thing to worry about! I do have very severe lower back pain (that's where my osteoarthritis is & hips,& am on opioid meds for the pain & my mobility is restricted so I don't know if I can have PsA there too? Thankyou so much for all the advice,there's so much to take in!xxx

[Victoria-NRAS Partner Moderator NRAS]

Hi Fearn

Welcome to the site. I'm really pleased to see what a great welcome you've had so far. I work on the helpline at NRAS, so would like to add a welcome from us, and also add responses to some of your questions.

It is generally recommended that people with RA have flu vaccine, as the drugs given in this condition, including sulfasalazine are immunosuppresants. However, not all GP surgeries feel that RA drugs suppress the immune system enough to warrant having the jab for free, so it is good to hear that your GP surgery are happy to let you have it.

The drug that they are starting you on is the 2nd most commonly prescribed drug for RA (the first most common is methotrexate). Everyone's reactions to drugs vary, but the side-effects listed are only ever POTENTIAL side effects, so hopefully you won't have any problems, or if you do they might be mild or get better as your body gets used to the drug. These drugs can take 3-12 weeks to work, so you may not get an immediate effect, but stick with it!

Also, the tiredness you mention is a common symptom of RA and drugs like sulfasalazine (known as DMARDs or disease modifying anti rheumatic drugs) work by slowing down the progression of the disease, and making it less active in your body, they can help to reduce all RA symptoms, including tiredness. In the meantime, pacing your activities out as much as possible can help.

If you ever want to speak to someone on our helpline, please feel free to call us on 0800 298 7650 (Mon-Fri, 9.30-4.30).

Kind regards

Victoria

(NRAS Helpline)

[FEARN2261]

Hi Victoria! Thankyou so much for the reply, I bet my questions are silly but there's so much to take in! I can't believe the welcome I've had,its been fantastic to be able to share some of my worries (although I wish we didn't have the diseases). Actually I should probably introduce myself properly, I just had so many things I was thinking about when I first wrote! My name is Sharon, I'm married & have 4 children (2boys,both autistic,& 2 girls) aged 17,15,11 & 9. I love crafting,but am limited to what I'm able to do at the moment,reading,music & my dogs ( I have 3, a labrador,a bulldog & a Coton de Tuleur), life can be pretty hectic in our house but I try to stay positive! This diagnosis has hit with relief ( I finally know what's wrong) & sadness,& has made me a little low today. Thankyou again to everyone that answered & has given support, I really do appreciate it!xx

[FEARN2261]

Hi everyone,just a quick update. I've been on the Sulf for 2wks now,but been on antibiotics too for a chest infection. I'm in horrific pain though,more fatigued than ever & generally feeling really rough. I haven't had an appointment for the nurse led clinic yet (due 6wks from hosp appointment) but am due to have bloods taken at GP surgery tomorrow. I am pacing activity (in fact I haven't been able to do much of anything!) I just wonder if it would be worth taking a multi vit? I'm maxing out on pain killers but pain is right in my hips as well as my spine & hand...please can someone tell me if I should be feeling a little better soon? Quite low at the moment,thanks for your help,xx