Have been unwell for past 18 months with fatigue, weight loss, anemia, joint and muscle pain. For the past 8 months I have had headaches,

blurry vision, jaw/nose/facial pain. Was on high dose pred, now on 10mg pred and just increased MTX to 25mg. I don't have a diagnosis other than " something auto immune ". My ESR and CRP are moderately raised, ANCA is negative. I have attended the vasculitis clinic in Aberdeen once. I was told there that they couldn't say if it was or wasn't vasculitis and because I have no end organ damage I was in a wait and see category.

My symptoms were starting to settle with the MTX although I noticed I was becoming symptomatic again 2 days before the MTX was due. I have been off work for 8 months ( I work in intensive care doing 12.5 hr shifts ) and am hoping to get back to work soon.

Unfortunately the past 4 days have been terrible. My facial pain is as bad as ever, especially my nose. My lips feel a little numb and my sense of taste has gone. My forehead is pounding. I am having to put up with the pain because no analgesia is effective ( have tried Tramadol, co Codamol 30/500, dihydrocodeine, paracetamol ). Am feeling very down as I felt I was making progress but now feeling as bad as ever.

Any suggestions anyone? I suspect I am just needing virtual cuddles!

[mickt]

Hi Keyes ,sorry to hear your woes.Im on 20mg pred and 20 mtx just started.Click my name to see my medical history too much to write on here.Sounds like your health team which I presume is a rheumatologist ,is waiting for something bad to happen ,which surely cant be right .You should ask for a second opinion if your not happy wuth the way your treatment is going.I like you have been off work 7 mth and am under occ hth talk of ill health retirement. It can be an added stress the work thing .Talk to your hr about occ hth schemes if any running .It is a frustrating illness vasculitis because there can be so many grey areas.I suffer badly from fatigue ,I got a brochure coping with fatigue off my rheumatologist.Hope you get sorted sooner rather than later.All the best Mick T.

[Mooka]

Hi Keyes Mickt is right, you should ask for a second opinion. It took me 19 months to get a diagnosis, my rheumatologist sent me to an Infectious disease doc at Addenbrookes who suggested I had MPA. My rheumatologist was adamant that I didn't have vasculitis, a kidney biopsy proved him wrong. The longer you go before getting a diagnosis the longer your recovery will take. I hope you feel better soon. Best wishes and lots of virtual hugs. Mooka

[Hidden]

Hi Mooka and mick,

Thanks for the replies.

Unfortunately my visit to the multi disciplinary vasculitis clinic was a third opinion.

My rheumy who started me on the pred and MTX is adamant that I don't have vasculitis but unfortunately can't give me a definitive dagnosis.

I have also seen a GCA specialist in England privately.

I return to the vasculitis clinic in Aberdeen next month so will see what they say then.

Just find it hard to cope when the pain gets really bad and I can't do anything about it.

Regards

Keyes

[newbie37]

could be TmJ a form of facial arthritis ?

[Hidden]

Hi Keyes, I suffered the worst headaches, facial pain, jaw and dental pain, tender scalp, stiff neck and numerous other problems with my joints as well as general fatigue. All of these symptoms were put down to chronic sinusitis until a scan revealed otherwise. I have had 2 nose biopsies, neither concluded vasculitis but have ruled out cancer and infection. I am ANCA positive and was diagnosed with WG in November after I lost hearing. I was given emergency treatment of steroids and have had cyclophosphamide. My treatment appears to be working...I'm on 30 mg of preds and I don't have the headache. All I can gather is that vasculitis symptoms are as unique as the person with it...so my variables.

[Hidden in reply to Hidden]

Hi vjt1300,

Can I ask what type of scan you had? I have had a plain MRI of my face which didn't show up anything.

Regards

Keyes

[Hidden in reply to Hidden]

I had a CT scan of my sinuses. This was to determine if I needed an opp to clear them but it only revealed there was no blockage. I then had the 1st biopsy as I have a lot of problems in my nose.

[Hidden in reply to Hidden]

Thanks vjt1300.

The only nasal symptoms I have is the pain, no bleeding etc.

What really upsets me is that my rheumy doesn't think the facial pain, headache etc is connected with the joint pain and fatigue.

Best wishes

Keyes

[Hidden in reply to Hidden]

I wish you the best of luck and hope you get the answers you need to your problems. You appear to be well armed with your knowledge, I hope you have the strength to see things through the malaise of the system. Vicky

[m4kin in reply to Hidden]

vjt1300, you have mirrored my symptoms. I originally had problems with my sinuses blocking up last May/June time, and after several unsuccessful treatments from the Doctors went to see ENT spec. He said the blockage was due to polyps, which I was booked in to have removed. Unfortunately, bleeding from the nostril, while trying to perform an operation is not normal, so I got sent to see another spec. I lost my hearing from September, and did not get to the appointment, my illness got so bad I was admitted before. I am on Preds 60mg, but still waiting for the cyclo treatment, I hope to find out on Thursday. Glad to see your treatment is working for you.

Keyes, hope you get an answer soon, it is such a problem trying to get a diagnosis for Vasculitis.

[Hidden in reply to m4kin]

I hope your treatment goes well. Is your hearing restored? I'm finding that as the steroids reduce some of my symptoms are slipping back...I have had 7 pulses of cyclophosphamide since November and I'm now down to 30 mg of preds. The care I'm getting can't be faulted as I have been monitored continuously. I hope you have the same positive experiences now you've been diagnosed. I changed to a different hospital with the help of my GP before I got my diagnosis as ENT, where I was were clueless. Good luck!

[m4kin in reply to Hidden]

They have not guaranteed that the hearing will come back, but it could do. I have a temporary hearing aid which goes over the head. Sounds like your GP/ENT department were on the ball, like mine, the treatment I have had from them has been second to none, just wish the Immune dept were a little quicker. I had my 3rd biopsy on the 20th December, and still waiting, ENT cannot do any more till cyclo treatment starts. I do hope the treatment has a positive affect on my symptoms, they get a little tiresome sometimes. I have maintained a positive attitude throughout, but am a little worried about the cyclo, and the effects it may have on me. It is there for a reason though, and I would rather feel sick/nausea, and have no pain and hear again! How many more pulses of cyclo are you having? Thanks for the reply, and hope the rest of your treatment goes well, and the symptoms do not get any worse.

[Hidden in reply to m4kin]

I so sorry you haven't got your hearing back. My ears cleared quickly with high doses of iv steroids and then I was on 75mg of preds. I started my cyclo the same week. My consultant decided to up the pluses to weekly. I do feel poorly afterwards, but like you I'm motivated by the benefits of the treatment. Please let me know how you get on. I had my last biopsy on 24th Dec and got my results on 3rd Jan...you seem to be getting a slower response from your docs than me! Have they given you an appt for your results?

[m4kin in reply to Hidden]

Have had biopsy results, and show signs of GPA/WG, and with all the other symptoms they have diagnosed me.

I first saw Immunologists on the 9/12/13, who gave me choice of starting the cyclo, or having another biopsy. At the time I thought it was best for the consultants, to get as much info from me as possible, so decided for the latter. I did not realise it would take 10 days, and a visit to the ENT dept, to get my 3rd biopsy done (biopsy on 20/12 got results 30/12). They (ENT) were not impressed. Unfortunately xmas is not the best time to have illness, and to get information from hospitals. ENT also want me to have weekly pulses, will just have to push the immune consultant on Thursday. I am sure things will start to move then. At the moment I am on 60mg pred, and at least I am able to get back to work, and some kind of life I had before. Luckily it has not affected any other parts, these were thoroughly tested whilst in hospital for 10days, in November.

[Hidden in reply to m4kin]

Oh thank goodness...you do have the answers. Good on you, I haven't returned to work as yet though, I would have struggled with the weekly treatments, just been signed off for another month. I hope it goes well for you on Thursday. It's different for each person that I talked to and some go to work the next day after treatment. I always suffer with my stomach afterwards...there is nothing glamorous about vasculitis! Oh and thinning hair compliments my new big round face beautifully! Ha ha. Good luck M4kin, let me know how you go on and take care.

[m4kin in reply to Hidden]

vjt1300, start my IV cyclophosphamide, on Wednesday. Biopsy did confirm GPA/WG so glad In a way I had it done, although it delayed my treatment a little. Onwards and upwards as they say.

[BronteM]

Hi Keyes,

Definitely lots of virtual sympathy and hugs from this end. Getting a diagnosis seems to be one of the worst of the hurdles that we all have to get over! It seems that none of us conform to a pattern, and one of the things we have to fight for is a doctor who understands this. It took me more than two and a half years, and having to learn that some of the odd things that seemed to silly to mention were needed for the diagnosis...

Now I'm on treatment it seems as if I am constantly climbing up a huge sand dune, only to slide back down whenever I glimpse the top. And if I had more energy I might be able to fight better.

So hang on; there are plenty of others fighting too, and we have to stick together and swap our ideas and frustrations!

[Hidden in reply to BronteM]

Thanks BronteM,

Will get through it all. Was feeling very sorry for myself and knew I would get sympathy from the kind people on this site!

Best wishes

Keyes

[Moley1 in reply to Hidden]

Hi Keyes

This site helps us realise what special people we are!

I am feeling sorry for myself, still battling a long chest infection but getting to work this week with slightly raised energy levels and enthusiasm only to fall yesterday (slip on wet floor) at work resulting in A and E visit. damaged cartilage in my right knee (did same 5 years ago) and possible wrist fracture!!  Back to fracture clinic this afternoon.  What fun.

Positive is: time to reply to you people who are soldiering on too. We have great empathy for each other which is a help and support. Bronte M said it so well 's as if I am constantly climbing up a huge sand dune, only to slide back down whenever I glimpse the top. And if I had more energy I might be able to fight better.' We are not alone.

Big virtual cuddle to you and all.

[Hidden in reply to Moley1]

Thanks Moley1,

I appreciate your message. Have been to rheumy nurse today for steroid injection so hoping that gives me a boost.

Good luck at the fracture clinic.

Best wishes

Keyes

[glendalafitte]

It is nick named "THE HURTING DECEASE" FOR A REASON...IT IS SO PAINFULL... I HAVE BEEN BATTELING IT FOR OVER TWO YEARS NOW. I am on retuxin and it is the only thing keeping me alive....I feel your pain...I know what you are going threw...it killed my kidneys...I am now on dialysis