Rare type of Vasculitis possibly or drug withdrawal - really struggling.
 

I weaned off Cymbalta last week after dropping down from a few months on 30mg to a few weeks on 20mg to a week on 10/5mg. I've been terribly unwell for the last two weeks and things worsened even further after I stopped altogether.

I don't know for sure that the severe foot and leg pain, nausea, loss of appetite and GI issues and sickness, nose bleeds, headache and jaw pain and laboured breathing/ chest tightness with dizziness are all a result of coming off Cymbalta. The timing fits but I've had a lot of these symptoms for a long time now - they've just got much worse is all.

I use Epsom salts and spray magnesium oil on my legs and arms each night but the pain is epic now. It is particularly awful in my feet, ankles (inside) and knees - where it throbs and burns constantly - affecting my gait and sleep. I would give this pain about a 9/10 on my scoring chart just now. But my hands and neck, jaw and nose, shoulders and my back are all very achy and neuralgic too. I am nauseous, retching after food and find it hard to eat generally because of jaw ache and fatigue - I can barely make the effort to go downstairs to eat and even opening my jaw wide enough is an effort. Temperature wise my feet are like iceblocks and I'm either chilled to the bone (the weather is really bad here in Scotland just now) or I sweat and burn.

I am taking paracetamol (panadol) daily for the headaches and trying to brave it out with the nerve pain - but am really struggling to do anything apart from lie in bed and try not to cry. It's so relentless. Part of me thinks I should just go back on the Cymbalta again and try and wean off even more gradually - but part of me knows that I will just be postponing trouble for myself. I need to know which symptoms are part of my overall condition and which are drug side effects. I will never know this unless I stop taking it.

Because of the nose bleeds and sores someone I know suggested I ask on a Vasculitis site whether this could be my problem. The admin responded saying that it could be a very rare type called GPA/ Wegener's. Has anyone here got periopheral neuropathy relating to this or other types of Vasculitis. It could just about explain my high inflammatory markers and could be crossing over with RA too. I read up and ruled it out because I don't have organ involvement. However this person said it's possible to have it in a limited form which doesn't involve organs.

I'm not really thinking I have this because the nose bleeds and sores come and go and my ears and organs have so far been okay.

But one thing is for sure I can't go on like this without something giving and would also be grateful if anyone could tell me whether they have had this severe kind of drug withdrawal problem with Duloxetine/ Cymbalta - even after only a few months taking it at a relatively low dose. If so how long did it last?

I'd get back to the doctor. Make sure he runs platelets too.

While coming off Cymbalta is tough, I have not read about desperate symptoms like you have.

You sound very ill to me.

Thanks Mrs D. Yes I feel very ill indeed. I phoned GP today and she suggested it could be a virus that is doing the rounds but I'm quite certain it's not because it's gone on for too long. She said to come in and get my ESR/ sed rate done tomorrow and if it's high we will know I'm flaring or have infection - if low or normal then assume it's the Cymbalta. I'm meant to be going away for work on Wednesday and part of me just hopes I make it and then collapse when I get there so that the hospital in the place I'm going to run tests and check things out properly for me. That's how desperate I've become!

But I can hardly walk for pain so I don't think I'm being very realistic. Even getting to the doctors to get my blood test done tomorrow will be a major challenge unless I wake up feeling much improved.

Sorry to ramble on like this.:rolleyes: Mat

Just throwing a dart
 

Are you safe from tetanus?

I'm not sure? - maybe. But these symptoms are just getting worse over quite a long period of time. Don't know anything about tetanus.

You know, it may very well be the withdrawal. I went back and looked and you only mentioned "planning" to slowly come off Cymbalta on the Feb 18...not actually starting the taper yet. So you are talking about a very short period of time to go from 30/40mg to nothing (less then 2 weeks)! I'd be willing to bet that the majority of this is withdrawal as it will make your original symptoms much worse.

Did you mention to the doctor about how fast you've tapered off? There was another poster here that recently had a very hard time coming off Cymbalta...took a LONG time to finally get off completely. And she talked about the same increase in symptoms like you.

It may have been doing much more than you think for your symptoms. That is the case sometimes and you don't realize how much it was helping until you stopped taking it and experienced your symptoms again without anything.

Just a thought. You might want to talk to your doctor about an appropriate taper plan to get off the Cymbalta without so much withdrawal.

I think you make a very valid point thanks En Bloc. I took two weeks to come off it alternating between 30 and 20mg and then halving 30mg capsules to take 15-5 for a week. The doctor was really unhelpful and said if I must come off then take 20mg for a week and stop. He didn't think there would be a withdrawal issue really apart from an increase in nerve pain. He was cross that I was coming off it at all and told my husband that it was the ideal drug for me and reason it wasn't working was because I had not given it long enough (3 months) and was on too low a dose. But having taken powerful disease modifying drugs for three years I just couldn't bear the feeling of only treating symptoms. I'd rather live with the pain, excruciating as it is, than feel trapped by a drug which may or may not be worsening my GI issues and making me put on weight. The longer i was taking it for the more inpossible it becomes to stop. This made me feel panic stricken somehow? I'm feeling cautiously optimistc that I may be through the worst - fingers crossed!

SSRI type drugs increase bleeding tendencies. Are you taking aspirin or NSAIDs now? They also do.

But coming off the Cymbalta should not cause nose bleeds.

Do you have dry nasal passages? Could you have Sjogren's?

This bleeding, could be that, just needing saline spray. But then if all those immune suppressing drugs you took before depressed your platelet count then minor irritations in the nose would bleed easily. Nose bleeds can come from sinus infections, hypertension, and also sores that develop in the nose over time from irritations or infections. If you were NOT prone to nose bleeds before, I'd focus on this symptom if it is new.

It IS winter time, so the nosebleeds could be from the dryness. One things that I find helpful is called Ayr saline gel. It's a saline gel that helps sooth dry nasal passages. I'm not sure if available in Scotland, but can't hurt to look for it or ask the pharmacist if there is something similar.

Keep in mind that your entire body is under a huge amount of stress right now, which can exasperate everything. You may not normally have nosebleeds from dry winter air, but under this new stress, you may now. And there is still the question of whether you have sero-negative Sjogren's...which certainly would cause dry nasal passages.

The withdrawal from Cymbalta can last a while...weeks. Especially with the quick taper. Your doctor is wrong to assume patients will be fine with a short taper and probably just dismissed any real plan because he/she didn't want you to get off it. So if you decide to drive on, then give it some time before you assess what your real symptoms are, as you won't know until the Cymbalta ordeal is over, out of your system completely, and your body recovers.

Nose bleeds or spotting from the nose can be a sign of dysfunction in the liver.

I'd be asking for copies of Liver Function Tests.

You should find out whether your erythrocyte sedimentation rate (ESR it's called here)/Sed rate is abnormal. ESR is often higher in people with autoimmune conditions, and lower for various others.

If you have a suspected inflammatory condition I'm sure your doctor would have done those before now. If not recently, ask for another. It should be a routine test under your circumstances.

I'd be concerned about taking daily Paracetamol if you are having nose bleeds. Paracetamol is metabolised in the liver.

P.S. Mat, you didn't have Rheumatic Fever as a child did you? Just wondering.