A very good consultation at last !

I had first appointment with new Rheumatologist last week. I am so pleased to say that he was the best Rheumy I have ever seen ! He said that he intended to begin right from scratch and disregard anything previous consultants had diagnosed. He gave me a full examination, every single joint, fingers, toes, ankles, the lot. He was horrified by my rash which is covering my arms, back and neck, even my eyelids and under eyes. He got pictures on the computer to compare, said he was not sure if it was psoriasis, but could possibly be lupus bearing in mind the rash round my eyes and cheeks. My arms are hugely swollen because my elbows very inflamed, and boy, do they hurt.

Anyway I am going to hospital in the morning, I am having X Rays on feet, hands, wrists and elbows, plus chest x Ray because he said the drug he wants to put me on requires chest X Ray first (which drug would this be). I was on MTX a while back till previous Rheumy decided I was in remission and did not need drugs !! What a laugh. I have gone down and down since then. Hence being referred to new Rheumy by my wonderful GP.

I have a whole pile of blood tests as well tomorrow. Some are the usual ones, like ESR, LFT, Hb, CRP, C3 and C4, but there's some new ones and I'm not that sure about them.

These are the ones :-

DsDNA antibodies

Ro/SSA, La/SSB. Jo-1. sci-70, Smith

Autoimmune antibodies connective tissue disease ANA only

Bone (incl. Magnesium).

I was actually diagnosed with RA 9'yrs ago. I had a very severe bacterial infection and this set off the RA within weeks, it hit me like a brick wall. I was on MTX and just about managing, but having flares quite frequently. During this time I have completely lost hearing in one ear, now losing hearing in other ear. Ent consultant says I have auto immune hearing loss. I was diagnosed with uveitis in May together with macular oedema and inflamed optic nerve. Again my eye consultant said it was all down to uncontrolled inflammation. He was horrified that my Rheumy had said I was in remission and advised me to find new Rheumy ! After guidance with my GP I have now seen this new Rheumy.

I have suffered osteo arthritis for many years, in fact I have been in pain most of my life, having had rheumatic fever as a five year old. My spine has sustained two stress fractures and several disc ruptures and bulges. When in the consultation last week I said to Rheumy that I did not think anyone understood the pain I suffer constantly. He said he absolutely did understand my pain and that he would sort me out. He was so kind and understanding and I have great hopes in him.

Meanwhile my rash is driving me round the bend. I am having to wear sleeveless tops because if I wear sleeves over my arms the warmth send the itching into overdrive.

So I am freezing cold as temperature drops !

But hey, I have good news too, our youngest daughter is pregnant with her second child. She already has one child, our adored 12 year old grandson, our only grandchild. She had to have IVF to have him and had completely given up hope of ever having another baby. She was divorced several years ago and is getting married again in January. We are praying for her to be well as she has had several miscarriages over the years. She is 40 yrs old now.

I would be pleased if anyone could enlighten me re. These extra blood tests,

Lynda xxx

[Barrister]

I had to have a chest X-ray before starting Humira so maybe he's thinking of starting you on that. It's to rule out TB. But I also had to have a skin test fir TB too. Anyway, whatever he has in mind for you, I really hope that it works quickly. Clemmie

[Hidden in reply to Barrister]

Oh yes Barrister, your saying skin test reminded me, I am being referred to dermatology for biopsy of rash, forgot to mention this ! Thank you Clemmie

Lynda xx

[Redrooster]

Having read your post I feel ashamed at my whinging. My flares are mere irritations compared to what you are going through. Please God this new Consultant will help manage your pain and your daughter will carry her baby to full term. So 2015 will bring a lot of hope with it.

[helixhelix]

Isn't it great when you have a rheumy you can talk to! I have a great one, and am so grateful when I hear awful stories about not-so-great ones.

The lab tests look like the ones used in diagnosing Lupus, as seem mostly antibodies. Look at labtestsonline.org.uk - although sometimes you have to search hard to find them in there as have other names. And like Barrister says quite a few of the drugs need you to be clear for TB, and have no lung problems.

But great! Let's hope this is the start of really getting your disease under control.

[Hidden]

Fantastic news Lynda - I am so pleased to hear that you're getting somewhere & have found such a great doctor. Will you let me know who you went for in the end? Because if you recall we both used to go to the same hospital ..... not sure if we saw the same completely useless (dangerously useless?) rheumy, but it certainly sounds like it.

[Hidden]

Lynda your poor skin looks horribly itchy. I have had periods where my skin has been this bad too - usually when ive been very stressed out during times of hormonal flux and my eczema has gone beserk in all the places you mention. When I was pregnant with eldest son I had it literally from head to toe for 9 months - horrendous!

Ironically I read your post while sitting here in a dermatology clinic in Aberdeen - feeling really stupid because my skin is the best it's been in ages! Still I do have photos with me and can ask about the Rosacea abd "scurvy" I was diagnosed with back in June I guess.

So pleased for you that this new rheumy is being so supportive and thorough. I understand how my rheumy was happy to let me stay off my meds but your old one sounds really awful to have done this to you.

I really hope that the next meds all work, you get skin appointment soon and all x-Rays are clear of erosive damage to date. Great news about your youngest I hope everything goes well for her. Take care,

Twitchy xx

[hatshepsut]

So glad you have found a good consultant, you obviously need his help!

Re the blood tests, the anti-ro and anto-la tests are used to diagnose sjorgrens syndrome.

Hope the tests go well, and you are soon able to get some effective treatment! M x

[allanah]

Brilliant Lynda, it does your heart good to be taken seriously!! Your rash looks do sore, lots of love and I hope they get to the bottom of it soon x

[Connie_C]

Hi Lynda. I really feel for you. The rash looks and sounds horrible. I've had RA my RA diagnosis since early 2011. I'm on Mtx and Enbrel (a biologic) and they're in a pen format. I had to have a chest x ray and be tested for TB for both drugs. I also have folic acid every day except my Mtx day as it helps with nausea and vomiting etc. I have regular DEXA bone scans as both drugs can affect your bones. In June of this year I was told by my Rheumatologist that I have now developed Osteopoiea - pre osteoporosispre. I take calcium carbonate with Vitamin D for this. That's probably why you're having a bone density scan. A good rheumatologist is vital for R A. After almost 3 years of treatment I'm now in clinical remission. However, last week at my rhuemy appt I asked about coming off or reducing my meds. The Dr told me that I'd be staying on the same drug's for the foreseeable future as it's because of them that I'm in remission. He said if I reduced them then I'd probably find the RA symptoms would rear their ugly head again ! My bp has been raised for the last 6 appt so this week I'm having a 24 hr home bp assessment done. I'm also going for a lung function test and lastly, as I've got 2 sore shoulders, I'm having a steroid injection in each shoulder. I hope you have a better diagnosis very soon and get put on a suitable treatment regime. I'd be interested to hear how you get on. Good luck.

[Hidden]

Hi jockety,

pleased to hear that you have got such a good rheumatology consultant and things seem to be being sorted. I have put a link to labtests online for you. You can use it to look up your tests:

labtestsonline.org.uk/

Hope you find this useful

Regards

Beverley (NRAS Helpline)

[Hidden]

Thank you for all the replies, it's always interesting to hear of other people's experiences and I value your input. I went up to hospital this morning, had six tubes of blood taken, the phlebotomist said I was having the full monty !! When I rolled my sleeve up and she saw my rash she looked horrified, I said don't worry, not catching, she said ' oh it looks like lupus rash'. So that was interesting !!!

Then I went down to and got my x Rays done, bit of pulling and pushing to get my bits right, bit of oohing and awing from me ! But they were very kind to me and tried their best not to hurt.

After I got gowned up, the x ray waiting area is next to A& E, Which seemed to be pandemonium. Two trolleys were wheeled in by me both got elderly men on them, both alone, I really felt for them, at least I had hubby with me which I was grateful for.

I have had a look at the lab tests online, and surprised to see that one of the tests is for leukaemia. I am trying not to think about that one !

I have been treated so quickly, I only saw Rheumy at midday Friday,,by midday today I had got all my bloods and x Rays done. Now I am just waiting for dermatology appointment for biopsy, etc. I went up to the receptionist in x ray and expressed my thanks for their getting me x rayed so quickly, she was really happy I had bothered to say thank you, she said most people never do, I think that's a shame.

Lynda xxx

[nomoreheels]

I'm so pleased that things seem to be moving a pace now Lynda.

If it'bathe cryoglobulin test that's alerted you don't panic. It's a specific test that has to be done differently & sees if there are abnormal proteins in your blood. It's used for many things keep including leukemia but if course it's only natural that word will probably loom larger than any other.

I hope all these tests lead to a quick diagnosis & treatment to relieve your multiple issues....& you're to be a grandma again, that's wonderful news, especially after being so fortunate giving you your grandson. I can relate to that!

[Hidden]

Hi nomoreheels , yes, hopefully I am on the right road now to finally getting some sort of diagnosis. It's been a difficult time this past few years, but as you say, good news about our impending new grandchild. Take care, lynda xx

[allanah]

When do you get the results?

[Hidden in reply to allanah]

Hi Allanah, I am waiting for appointment with dermatologist to have biopsy of skin lesion etc. I was told at rheumatology clinic I would be sent for when all the results were through. Well obviously the bloods will come through first, x ray said results in two weeks, but I expect this dermatology appt might take some time. I am hoping I will get sent for if positive results in blood and x rays. Meanwhile I am back to GP Thursday, I need more lotion or something for the rash as one I am using not much good and I am going to ask for something to help me sleep, the itching is completely ant sleep. I am here now at 2.40 am., been to bed, had to get up already, itch driving me mad. As soon as I warm up, it starts.

Wherever the rash is on my body, is where I am suffering the most pain, like elbows, wrists, shoulders,,neck, knees and feet. I even have sore eyelids and red sore patches under my eyes over tops of cheeks. Of course my eyes are sore because of uveitis, but the surrounding tissue, I don't understand !!

lynda xx

[earthwitch]

Those blood tests are part of the panel to screen out lupus and other non-RA connective tissue disorders. Seems like he is being pretty thorough. Chest xray is usually done prior to anti-tnfs, as they need to make sure you don't have latent TB, as antitnfs would trigger that.

[Hidden in reply to earthwitch]

earthwitch - I had the x rays and blood tests done yesterday. I am waiting for appointment with dermatologist which I know in our area has massive waiting list. I have to get a biopsy taken off one of the lesions. My rash is getting worse by the day. Thanks for the info. Re the blood tests. I will post again when I hear something. Lynda x