Struggling.

[smithfield]

Hi, I am new to this group of any like it for that member but a I am a member of NRAS.

I have system lupus and Coeliac Disease, both for over twenty years. I follow the diet.

About 2 years ago I was diagnosed with Rh.Arthritis treated initially with steriod injections.I take 10mg daily to hold the lupus at bay. As you are all aware the injections are not long lasting so I had the ups where I could conquer the world but back came the pain when the injections wore odd. The lows.

So my consultant tried Metherdrexate fine give me anything. But after persevering with them for 5 months my GP took me off then.

Saw a different consultant who started me on Hydroxychloroquine and screened me for Certolizumab pegol which I no very little about. However my blood test came back as TB positive that was 6 weeks ago and I am still shocked, last thing I expected so at the moment waiting to see the chest clinic in March and cannot commence ant treatment till then.

I feel the Rh.Arthritis has changed me so much the pain is so awful some days both my hands and feet are deformed and it is in my knees and starting to attack my ankles.I am so irritable, not sure why my husband is still here. Chronically tired but cannot sleep well as I stiffen up and the pain wakes me. If I go out it is in short bursts and I spend a lot of time on the sofa. I feel depressed and cry a lot at the slightest thing. I feel the disease defines me.

Sorry This is so long winded but just writing it down for the first time helps.

[medway-lady]

So sad to read this what rotten luck. I think RA is not the main issue but TB is a disease that is on the rise, did you not get the test at school ? I can only hope your consultant is able to help you asap best wishes.

[Hidden in reply to medway-lady]

TB is highly contagious. Are you allowed to go out?

[popsmith1874]

Hello there I've got Ra as well and oa I've had it a couple of years and it's still not under control as with you it's from the hands down that's giving me big problems and it's taking me 2 years to accept this disease but I realise that it's not going to go away so I've just got to make the best of life I can. My wife is my savour and I know it must be difficult for her at times but we have been married 30 years and if it was her who had this disease I would look after her

[smithfield]

Hi thanks all for taking the time to reply. All the signs are it is latent sorry should of said that which is why there is such a gap between the diagnosis and the appointment. And I have been told to carry on as normal till then.But regardless of it being latent or active it will still involve 3 to 6 months of treatment before I can start any treatment for the rh arthritis.

No I was not tested at school do not know why.

[earthwitch]

Just for information - the screening tests are looking for any indication of latent TB - that doesn't mean you actually have active TB right now, but that you could get it - and as biologics are known to trigger TB, its important to treat anyone with latent TB before they start biologics. Annoying when it means waiting an extra six weeks or so to start biologics, but a whole lot less annoying than having active TB surface further down the track.

[Fcrooks in reply to earthwitch]

Interesting, I have RA/RD which was diagnosed 2 years ago when I was 58. I'm on Dmards and when I was a child i tested positive for TB but was not active however, was hospitalized for 3 months with my family who had tested positive and there TB was active. I always wondered if I would be able to take biologics if I started to have issues with dmards. I will discuss with my doctor as it sounds like I could just need to be treated before starting.

[smithfield in reply to Fcrooks]

Good point from the little experience I have I think you probably would need to be treated as they cannot start dmards. until you are clear .Forgive my ignorance but does the fact you were latent but not treated make you still latent.

[smithfield in reply to smithfield]

Sorry that should say biologics not dmards

[Fcrooks in reply to smithfield]

my understanding is TB was undeveloped for myself and one of my brothers. My youngest brother and my parents had active TB. We all went into a sanitarium and were separated and treated. It was myself being the oldest that showed positive to TB through the TB test in grade 1. The way it was explained to me is I had a scar on my lung and would be easier for me to become active than someone who never was exposed to TB. I had regular chest x-rays for several years and was taking strepthomycin while in treatment. Interesting enough my brother at 36 developed lupus (autoimmune) and passed away at age 38. My doctor advised after my 2nd child not to have any more children as I had signs of a auto-immune decease. Hence RA diagnosed at 58.....I knew something was going on for about 2 years prior at I was very fatigued and I`am a very active outgoing person. I find all of this bizarre and this sight has helped me in so many ways.

[smithfield]

Thank you I totally agree. I posted on here to see if anyone had had a similar experience or had taken hydrochloricquine on its own as a treatment for rh.Arthritis.

[sylvi]

One thing to tell you above everything else is YOUR NOT ALONE ANYMORE, there will always be someone who will answer you on here. I spend a lot of time on my recliner beause of pain/fatigue/exhaustion etc. I have RA/Fibro/CFS along with other problems including a bad back and neck,so i am in pain almost all of the time at one degree or another. Some days are better than others,if i go out it is in the mornings as by lunchtime i have had it and have to sit down.xxxxx

[Beaches2]

Hi Smithfield

Sorry to hear you are going through all this, it must seem endless and really frustrating for you. I have seen discussions on here before about latent tb and needing to have the treatment for it before starting biologics. Perhaps you could do a search for it on here?

Can you have another steroid jab to see you through while waiting to start biologics?

I would call the rheumy team, tell them you are really struggling with things and see what they can advise around pain control, Steroid injections etc.

It's going to be a tough few months, but once you get started on biologics they can really be a game changer and hopefuly you will be able to start reclaiming your life.

There is some useful information on the various biologics on the nras page.....think the one you mention is what we usually call cimzia ....why do they all have such wierd names?..... There are plenty of positive stories on here about people doing really well on it.

Hope you feel a little better soon......lots of support and empathy on here x

[nomoreheels]

Welcome Smithfield. My first DMARD was hydroxychloroquine (HCQ), as the diagnosis clinic & my Consultant were both less gung ho. Thinking back I'm reasonably sure it was chosen because at diagnosis imaging showed I only had active RD in my feet. I was fortunate that I was diagnosed early & I think that has helped in the long run. The clinic also prescribed a couple of NSAIDs & a short course of steroids which saw me through to the HCQ working but it must have been 10 weeks or so when I felt like i had my feet again. I remained like this for just short of a year when methotrexate was added but the results weren't good so HCQ was stopped & MTX took over. I never did understand why I did better with MTX monotherapy but I've remained on MTX (injections), at differing doses with the odd course of steroids (currently & for the past 4 years also NSAID, pain relief & maintenance dose steroid) & only now 7 years later I'm needing to add another DMARD.

I did have some side effects on HCQ, headaches, light sensitivity, I had to give up on wearing my contact lenses because my eyes were constantly dry & no amount of comfort drops helped, & I tried a few. I lived in a sunny country at the time so when outside I needed to wear sunglasses but once the HCQ was stopped all returned to normal. But do bear in mind we all react differently to meds so you won't necessarily have any problems!

Hope this helps & you do well from here on with HCQ.

[smithfield]

Hi Sylvi, nomoreheels and beaches. Thank you for your helpful and positive replies. I do have according to my consultant severe arthritis. And you are right early diagnoses is important unfortunately my first consultant seemed reluctant to treat it with aggression and I was new to it with very little knowledge or experience so passively accepted. The new consultant I have seen was frustrated that it had been allowed to get this far and started me on Hydoxychloroquine with screening for Cimzia ( thanks for the abbreviation}. and the TB was picked up delaying treatment. I am hopeful that I can get through the few months of treatment for the TB then get onto the Cimzia. I remain on the Hyroxychloroquine I have been taken it for 6 weeks now with no drastic side affects so maybe that and steriod injections will get me through.

I have an appointment at the clinic Tuesday as one of the doctors contacted me asking how I was feeling as my CRP was very high.

I am new to this group so really appreciate all the advice and support. I have researched Latent TB on other sites but it has been mainly text book stuff rather than gaining knowledge from people who have experienced it. So I will start looking on here. Thanks.

Nomoreheels did you find living in a sunny country helped your RA at all?

[nomoreheels in reply to smithfield]

It's something I was asked a lot when we returned, "surely the the climate was better for you?!" Well, yes & no. I find humidity is as bad for my joints as dampness (we lived in the mountains so had more rain than you'd get on the coast) so for probably half of the year I was fine. For someone who loves the sun when RD joined in I became less tolerant of heat, mid summer was very difficult especially at night, we didn't have air con because that affected me. Shopping in summer was difficult too, the change in temp from outside into air conditioned shops. So Spring & late Autumn were the kindest, most pleasant times of year. I understand why the question's asked, it's lovely to go on holiday but living & working in it is quite different! The ideal would to be there for March, April, May & late September, October, November.

I couldn't fault the treatment & care I received there though & I was better controlled there as a result!