Hi I am new here

[Rap-17]

I have had RA for about 20 years I was on Methotrexate, hydroxychloroquine, folic acid calcichew D3 ,and co-codamol for bad pain. In 2010 also went on biologic injection Golimumab once a month. i had good days and bad days and was coping until two years ago when my lft's were deranged so they stopped the methotrexate.

A few months later they tried me on a lower dose of methotrexate but liver results went up again. They thought it was gallbladder which I had removed last year, tried me on a new biologic drug injected weekly but liver shot up again. I have had no treatment for RA since then. Gradually I have got worse and worse but had other medical problems in between which has held up the decisions made by rheumatologist. Then I was referred to gastrointestinal early this year. I have had all sorts of blood tests, ultrasound on liver and then MRI on liver, I am now waiting for a liver biopsy to determine what the damage is as they feel I have PBC.

I will wait until I have it done and see what the results are before asking any questions, just found this site and from what I have read it looks like a good network support here. I am so tired I just wanted to get some ideas to help myself so glad I stumbled in and hope I get to know you all soon. 😀X

[Hidden]

Hi Rap-17, welcome to HealthUnlocked but sorry to hear you've been struggling so much recently. People are very friendly and supportive on this site so stick with us.

[Rap-17 in reply to Hidden]

Hi Caroline

Thank you for the welcome! I felt the support by just reading a few posts. I never realised the site existed but I am glad I found it.

I have had a lot going on since 2014 and prior to that I supposed I just got used to my flare ups and good periods so never thought to look for anything. I suppose the stress from 2014 triggered off things with the RA etc and since July 2015 I have been on an emotional and physical roller coaster so need someone who understands this side of things and so feel I have found my place of solace.😀 Looking forward to getting to know you all.

Kind regards

Dee x

[nomoreheels]

I don't know how I missed this but it seems I'm not alone, so a belated welcome. Seems you've a lot going on & stopping your RD meds isn't helping but suppose with a history of liver issues & their current thinking it must be necessary. I hope you do find it helpful being here with us on the creaky joints site once you've a better idea of what's what, I do hope it's not PBC, though once diagnosed with one autoimmune condition we do tend to collect others.

Any questions just ask away, we've lots of info we can share. 😊

[Rap-17]

Thank you for your kind welcome I am sure I will have plenty of questions once I get going, so watch this space😀

Everyone so far seems so friendly that just knowing you are all there has made a difference.

I will be happy once I get biopsy out of way and know what I am dealing with. Yes RA or any auto-immune disorder does seem to attract a few things along the way. Being without any meds is tough but yes I can see because of the liver they have to be cautious, just have to ride the storm until it's done. Hope it's not too long a wait!

How long have you had RA and do you have other probs too? Don't mean to pry but obviously I haven't got round to reading about everyone yet so am interested in your experiences too.

Kind regards

Dee x

[nomoreheels in reply to Rap-17]

I don't mind at all Dee. I was diagnosed seropositive in 2008 at 48, also OA, specifically only cervical spondylosis at the time but since lumbar, knee etc. For about a month I had really bad pain in my feet, inflammation too, & when my h had to bring the car because I literally couldn't walk one day when shopping at the market (I was living in Spain) I saw my GP the following day. She fortunately had an interest in RD & arthritis & her suspected RD, took RF & anti-CCP which confirmed her suspicions & I was diagnosed at a Diagnostic Clinic a fortnight later. My feet remain my most problematic joints.

HCQ was my first DMARD, it worked for about a year but as you'll know 400mg is the highest dose for RD & I'd been on that since the start. MTX was next & I've been on that 8 years, 7 of them subcut. SSZ was added as I can't go higher than 17.5mg MTX (liver) but side effects were too much so last November LEF was added but as yet I don't think it's helping. I'm on prednisolone, staring to taper that when my nurse gives me a tapering plan next month. For OA I take etoricoxib, co-codamol, amitriptyline, Lyrica, Butec patches & I have osteopenia/borderline osteoporosis & take AdCal-D3. I think eating well is helpful & exercise too.

That's a brief history of me! 🤗

[Rap-17 in reply to nomoreheels]

Hi Again,

Thank you for sharing your journey so far with me. You have obviously had your fair share of trials with this disease and my heart goes out to you. It is also surprising how many similarities we have, seems to be a pattern that goes cap in hand with RD/RA.

I had never heard the term RD until I read some posts on here and wondered what it was, looked it up and realised that yes that's what I have. I spent four years seeing a rheumatologist to no avail and had been passed to other doctors, began wondering if this was all in my mind until a bad bout with my knee and like you could not walk properly. A visit to my surgery and a blood test revealed a positive result for RA and referral back to rheumatology. That was in 2001and a new rheumatologist, also at that time I had very high liver enzymes and before any treatment for RA( they have never used the term RD) they had to clear the problem with the liver first before giving me any treatment.

I also have osteopaenia, for which am taking calcichew D3 and Alendronic acid. I have also been told I need a cervical decompression operation but due to so many things happening last year it had to be put on hold. Once I get my treatment back on track the rheumatologist has said he will refer me back to spine surgeon.

I am not very good with pain killers etc and most things tend to affect my liver so my medication at present is very limited, like you my feet are my worst enemy and I have also developed ulna drift in my hands.

I do hope you are ok when tapering off prednisolone as I know they do help. You are like me, excercise and positive thinking are a must so you have a good outlook in dealing with it.

Once again thank you for sharing your journey and I have learned a few things already. I also feel more positive knowing that others are treading the same path so I don't feel quite so alone ☺ xx

[Gnarli]

Hi rap17 and welcome to the club you never wanted to join. I'm really sorry you're having such a rotten time and hope that your biopsy gives some answers. I find it so much easier to deal with concrete facts rather than guesswork and supposition. You've found a forum here ready, willing, able and happy to listen when you need to have a moan, a vent or just chat. I'm looking forward to hearing from you again soon. Hugs

Jan

[Rap-17 in reply to Gnarli]

Hi and thank you for the welcome. Once again everyone seems so friendly and supportive.

How long have you been on this site and how does it help you in your life? It seems rude to be asking but I would like to know about you all and especially with the welcome I have received.

Look forward to hearing from you.

Dee.xx

[Gnarli in reply to Rap-17]

Not a problem. I joined the forum last October before I received my diagnosis of RD but suffering painful swollen hands and wrists. I was told I had the rheumatoid factor in my blood over 20 years ago but told to "go away and live my life". I've had various joint issues over the years but neither the GPS or I ever joined the dots. I've had loads of good advice here, shared experience and been able to ask the questions that might sound silly to anyone else. This forum has been a lifesaver to me because none of us want to burden our nearest and dearest with every cough and spit of our illness do we? Now, I do love a laugh and we can share some lovely giggles here too. Not all gloom and doom. Hugs

Jan

[Rap-17 in reply to Gnarli]

Hi Jan

Sounds like you too have had your fair share of pain and suffering and yes as you say to be able to share with others helps to put things in perspective, saving all the burden going on nearest and dearest.

I remember always having a laugh and went dancing every week life was brilliant even with my pains and then I became worse and couldn't seem to explain to friends and family exactly what was going on, gradually I gave up on me for a while because when I had to change my life to suit my ability I realised who was who and began to feel isolated and I suppose let down. Took a while but realised people didn't understand, not their fault so I had to sort myself out. Just began to get there when I had a very bad year losing my Mum and a brother within 3 months and then a month after that on Christmas day my husband had a bad stroke, it took 6 months to get him back to being able to swallow food without having it purified and having to thicken all his drinks to stop him getting infection,memory problems etc that go with a stroke. We got there thankfully he gets a few probs with sentences when he is tired now but we laugh our way through it. Anyway a month after getting him straight I then began my two year nightmare of stopping and starting my RA treatment and feeling so I'll until recently when they sent me to gastroenterologist and I can breathe again knowing whatever there is treatable, just everything takes so long to get seen and get results. Sorry to be so long winded but trying to let you know why I was so happy to find this site.😊

I realise how many are either suffering the same or worse, I didn't want to hit a low like before so wanted to find a way of helping myself, which I feel I have done so have lots now to look forward to.

Thank you for reminding me about laughs and giggles, and for your time.

Kindest regards

Dee

[Gnarli in reply to Rap-17]

Hi Dee. If you're lucky enough to get to my age, there is always going to be something putting a crimp in your life. I'm so sorry to hear of all your troubles and wish you better. Hugs

Jan

[Rap-17 in reply to Gnarli]

How old are you, if you don't mind me asking?

[Gnarli in reply to Rap-17]

I'm 63. Is that important?

[Rap-17 in reply to Rap-17]

Hi Jan

Sorry I didn't mean to pry I was just wondering when you had said that 20 year ago you were sent away to "live your life" that I imagined you being very young when they said that. You are still young as I don't class myself as old and I will be 67 in a few months.

I am hoping they sort out some medication for me soon as I have lots of living to do yet 😀

[Allsopp]

Hi rap,

I am so sorry to hear about your health issues, it was upsetting to read. I really feel like it was important that I message you to see if there's anything I can do to help.

Please look into the work of Chris Kresser, Justin Sonnenburg, Rhonda Patrick, Amy Myers, Terry Wahls, Dave Asprey, William Davis and many, many more like them, because there's a good chance they could provide you with information that could help you start to reverse some of the health issues that you're experiencing.

PBC is scary, but it's also important to remember that our bodies are very robust. The Liver is one of the most resilient organs in our body. It can take a lot of damage and punishment. Liver damage can often be healed and reversed as long as the damage is not too severe.

Please don't hesitate to PM me if you need help digesting any of the information from the sources of help I've recommended.

It upsets me to read about someone suffering so much, so I am happy to help however I can.

Good luck.

xxx

[Rap-17 in reply to Allsopp]

Thank you for the welcome and the help you have offered, I am grateful and will look into the names of the people you have mentioned.

I did start a reply and nodded off to sleep and couldn't find it when I awoke, so if you receive half a message you will understand😂

I am waiting for the liver biopsy to confirm pbc as everything else points to it but no AMA's showed in blood test but the consultant told me it doesn't always show and the biopsy will confirm and show how much damage. I can look further once I have confirmation.

Once again thank you and I will keep you informed once I know what is happening. Lovely to hear from you.

Kind regards

Dee xx