Is prozac the answer to wegener's ..........er no !!

[Fran]

Before I tell my story, I want to say how much I admire those of you who have and are suffering far worse than I, because I realise that I got off lightly compared to a lot of you good people - and how some of you cope with what Wegener's has dealt you, and bring up young families and care for family members, well..........you are special !! Thank you all for the privilege of reading your stories - what a lovely bunch you are.

Here goes, I wanted it to be short but regretfully it ain't because when you start, all the little hangups you've kept in the cupboard come spilling out - but it's good for the soul so thanks.

I was diagnosed with Wegener's in June 1998 after a couple of years of 'mystery' symptoms ~ starting with a dodgy ankle and foot followed by a rash on my arms, legs and swollen knees, pains in the joints; this was assumed by the doctor to be an allergic reaction to oranges!. These symptoms would come and go, but the awful sinus with post nasal drip, ear pain and deafness was very persistant but the ENT consultant said he saw this all the time and could cure with a day-stay operation. Of course with hindsight, this was unnecessary and exacerbated the problem. I felt as if all my strength was draining out of me and I started 'doctor-bothering' in earnest because I just felt so ill and was not in control any more, but eventually by the end of a two- year period of on-off fevers, kidney pain, bloodshot blurry eyes, recurrent cystitis, not able to walk and all the above, I was totally wiped out, I was sleeping round the clock and so fed-up with the reactions of the various GP doctors, who, by now ( it suddenly dawned on me in my dozy confused stupor), were treating me as a menopausal depressive ~ with prozac!

When my GP wanted me to take yet another course of prozac. I just lost it and demanded to know why he was letting me die. Why I didn't do this before, I just don't know, because it was like the proverbial lightbulb switching on over his head ~ he suddenly said he knew what it was but that it was rare ~ he faxed the main teaching hospital in the area and I was admitted next day. Why I did not lose my temper before, I cannot for the life of me answer, as when well I , I am not a 'walkover'.

Diagnosis was by nose biopsy and various scans and u'sounds showed lung and kidney involvement. Whilst in hospital I was asked by my WG rheumy to take part in a presentation - I was wheeled into a theatre and lots of doctors were all around (including a professor from Birmingham and they were all asking me questions and conferring over the scans etc. It's a blur to me now - but what price for 'fame for a day' !!! I did the chemo ~ cyclo + pred + mesna in pulses + pred orally (60mg I think) and soon began to feel better, tapered off completely and then just went on 10mg methotrexate a week .

So for the past 11 years, although I don't walk well and still experience the overwhelming fatigue now and again and have high blood pressure, I have been maintained on just the mtx - but now and again if I start to get the very low energy levels my GP gives me a pred injection ( 3 times in all) - which has given me an energy boost. I even achieved my lifelong ambition to visit America (2002) - which I bore everyone about!

Now, however, things have not been so good for the past 6 months I feel like the WG is waking up - extreme fatigue and can hardly get out of bed for the pain in the joints etc but my WG rheumy says it's not Wegener's . I have lost count of the scans, u'sounds and blood tests etc I have had lately plus the radioactive bone scan because he admitted he thought it might be myeloma, but it was fine...phew.... The upshot is some of my blood tests showed high calcium and PTH so now I am waiting an appointment with an Endocrinologist with suspected hyperparathyroidism. (When I googled it plus WG it came up as a not unknown combination.)

Oh dear, I didn't mean for this to be so long, SORRY !!! I told my rheumy I couldn't believe it wasn't WG it feels the same and he agreed and then prescribed 15mg daily Pred - just in case for 2 weeks - if no boost - leave off . I take Atenolol, Bendrofluazide (diuretic) and
Amlodipine for blood pressure and thinking about it afterwards I can't believe this will be a good combination for 'just in case'. I didn't even think about it at the time I was so relieved at the result of the bone scan. Pred after 12 years .......NOOOOOOOOO !

Thanks again, wishing you all better health.

Fran

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[Jack]

Thanks for telling your story Fran, unfortunately it is far from unique. :(

It does not sound as if your Rhumy is a Vasculitis specialist or I think he would have assumed a flare up of Wegener's until proved otherwise with your history. I'm not at all sure that taking 15mg of Pred for two weeks will prove anything. It will just mask the symptoms for a while and may even give you further trouble when you stop taking it.

One thing I noticed is that you don't take Ramapril for your blood pressure. Since you had kidney involvement, this may be a better choice for you than the Amlodipine.

[elephant]

Welcome Fran, I agree with Jack. I think your WG is flaring too. Sounds like you are persistant and let that doctor know that this needs to be addressed.

[Fran]

Hello Jack - Thanks very much for replying. Have noted your comment about Ramapril and will bring this up with GP - thanks. My Rhuemy is a specialist in WG and has in fact published papers; and he has done all all the bloods and anca tests, u/sound on kidneys and cat scan on lungs and can find no sign of active WG. Some of the hyperparathyroid symptoms are almost identical to WG. I do not intend to start the pred I think it would be foolish in the circumstances.

I really appreciate your input as my problems are so trivial compared to many on the forum and hope you are doing better and getting on well with your new sticks -good luck. Fran

[Fran]

Hi Elephant - Thanks very much for your reply and welcome - much appreciated.

Fran

[Jack]

Thanks Fran. I'm a bit wobbly on the sticks at the moment. I need more practice!

Oddly enough, I was tested for hyperparathyroidism too (can't remember the reason now). Maybe the symptoms are yet another incarnation of Wegs that has yet to be recognised. There seem to be several conditions that are common amongst Forum members that don't come up in any of the papers on the subject. There is still much to be learnt.

Glad to hear that you are in good hands after all. ;) We tend to always be worried about the standard of treatment patients are receiving and not without good reason.

[Sangye]

Hi Fran, welcome to the group. I'm glad you already have a Wegs specialist. I would like to say, though, that Wegs can become active without showing up in the bloodwork. Last year I started having the same symptoms I did when the Wegs began, but all the tests were fine for several months. Finally my lungs started hemorrhaging and it became obvious. My only symptoms before that were increasing fatigue, pain and difficulty breathing.

No test or doctor knows your body better than you.

[Fran]

Hi Sangye, Thank you very much for the welcome and your advice - you are right, of course , who knows our body better than ourselves!
I think my rheumy was thrown by my unusual blood results after being 'neutral' for so long, particularly the high calcium and PTO. I do know he conferred with another rheumy and 'phoned an endocrinologist. What I don't understand is his positive statement that it's not WG (with all it's sly little ways), and then prescribe pred 'just in case'. I will see him in 3 weeks and discuss it further !

Anyway Sangye, more to the point, how are you, as I have read what a time you have had, particularly lately. Do hope you feel better soon.
Incidentally, I had labyrinthitis last year (as did lots of people at my doctor surgery) what a horrible thing it is - the dizzyness, earache and deafness took ages to settle - hope you are not having such a bad time with the effects now. Thanks again.

[jola57]

Hello Fran and welcome. It seems that without going into details, you are similar to me. Predominantly I suffer from foot neuropathy and have eliminated most of other ailments with cyclo and pred. Have been on mtx 10mg for almost a year and everything looks good. Thank you for sharing your story, I can hope now (realy hope) that I will be symptom and weg free for a long time like you. I am at present tapering from pred at 4mg, soon, in 1 month I hope to go down to 3, then by 1/2 mg in 2 months to 0. I have hypothyroidism. Have had it for 24 years and take synthroid. Beside it I only take mtx, pred, Ca, D, B6/12, Nexium (for stomach), Actonel for bones,.

[Sangye]

Anyway Sangye, more to the point, how are you, as I have read what a time you have had, particularly lately. Do hope you feel better soon.
Incidentally, I had labyrinthitis last year (as did lots of people at my doctor surgery) what a horrible thing it is - the dizzyness, earache and deafness took ages to settle - hope you are not having such a bad time with the effects now. Thanks again.
I'm doing much better as of the past couple days. Did they treat your labryinthitis with high dose pred? That's what got my hearing back. It's almost completely normal. Vestibular PT is making a big difference in recovering from the unsteadiness and residual vertigo. I've been really lucky. If I hadn't had my JHU ENT on board, I would have lost all my hearing in one ear.

[Fran]

Hi Sangye, glad you are doing better now...... I was not prescribed pred for the labyrinthitis, it was something called prochlorperazine ( was a bit apprehensive when I read on the information leaflet that it's also to treat various phychoses) but I took anyway because, as you will know only too well, desperation takes over. I did not lose much hearing as far as I can tell, although my husband says the volume button on the tv keeps going up, but I do get tinnitus but it's not bad. I think it must have hit you much worse than me especially if you were in a weakened state anyway.

Wishing you well very soon. http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

[Fran]

Hello Jolanta, thanks very much for replying - I hope you achieve your goal very very soon to come off the pred . I feel a fraud coming on here being almost pred-free for all that time when so many are struggling. I will give you a big cheer when I read on your post that you've done it - good luck!

As regards the hypo and hyper -parathyroidism --looks like I'm making too much PTH and you too little - pity we can't do a trade. Can anything be done for your foot or is it something you have to live with - is it nerve pain?

[Sangye]

Fran, I was off pred for 2.5 yrs also. I wasn't doing well in that time, though and believe I needed to be on at least 0.5mg pred due to adrenal damage.

No one with this stinkin' disease is a fraud. If you're doing better than others, that's a good thing. :thumbsup:

[freakyschizogirl]

I had Labyrintitis earlier this year too...tho i didnt have the deafness and had a dose of anti biotics

[Sangye]

They shouldn't treat labryinthitis (a viral infection) with antibiotics. They're only effective for bacterial infections. Each time we take an antibiotic not only is there destruction of bowel flora and the risk of allergic reaction , but we make it more likely that the antibiotic will be ineffective for us in the future. For a Weggie, none of those is a small thing.

[Fran]

Hi Sangye, Thank you - I did reply to you again about the labyrinthitis re the pred. on this page somewhere and say that I was prescribed prochlorperazine but then I thought I saw a post of yours regarding hearing problems - but I can't find it now. I am very new to forums and home pcs (only medical comps where you just fill in the bits) and I keep floundering - and it's hard to keep up at my age with all the bright people on here even with your pred fogs ! http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

I wanted to add that I have a lot of difficulty in carrying on a conversation if there is background noise - just can't hear clearly at all - whether it be tv, crowded room or just noisy street traffic - whether it's been since the labyrinthitis I don't know because when I got my hearing back in that ear, I assumed it was the same. Time to get it checked I think.

Hope your hearing is improving and everything else is giving you some well deserved peace.

Fran