Update on Ingemlb

[ingemlb]

Quick update to keep this "progress" thread up to date. I didn't last all that long without pain meds so back on Panadol Osteo (1300 mg 3x a day) as otherwise I am not coping too well. I can't seem to make up my mind if this is withdrawal from pred or flare. I went down another 5 mg to 20 mg of Pred yesterday. Feedback I am getting seems to be the withdrawal only gets really tough when you hit much lower doses of pred. Anyway it's now less than 2 weeks until my next appointment. blood tests again next week so they will surely show something if there is a flare going on. Hopefully my Rheumatologist will have some idea as to what's going on or suggest further tests. It's funny how each time I have these episodes (whatever they are) the pain is in different places. In the hospital I had bad pains in the feet and side of knee. Once they went never came back. Then I had bad behind knee pain. That hasn't come back. Then I had the flank pain and that hasn't come back. This time its the centre of the back, feels like the spine but it was recently MRI'd and found clear. So ... all soft tissue inflammation they think. The hardest to cope with is the weakness and pain in back of head, neck, shoulders and top of back. it's what makes it hard to be upstanding for more than 10 to 15 minutes at at time. The pain in the centre of the back responds to the strong paracetemol. Once I am resting I feel quite reasonable apart from the fatigue. This time of day (6am in the morning here) is the best time for me. I had a long sleep and woke up feeling quite good. That usually lasts until 9 am before the symptoms start coming back.

[BookNut]

I have not been following this thread closely, so I don't know what has gone on. Have you been checked for fibromyalgia? I have a niece with that and the symptoms in your last post seem to match hers.

[ingemlb]

Hi Jacquie. I have no idea if they checked for that but before my Wegener's diagnosis they did every imaginable test and decided all symptoms I had early in the year were due to Vasculitis / Wegener's. The symptoms when they occur are still the same except in different locations. i.e. the inflammatory pain seems to migrate around the body. Which is what it did last year too before I was diagnosed. When I first came home from hospital on 40 mg of Pred I had a month of feeling really good. Even managed my treadmill several times a day. Since then it's been up and down however blood tests are good and so we are trying to reduce the pred. Main reason I am dead keen to reduce the pred as fast as possible (I also take Methotrexate and BACTRIM DS) is I am hoping to reverse the diabetes. Feel I could do without that added complication. But I read the longer you are on high dose pred the less likely you are to reverse steroid induced diabetes. So ... not sure if it is already too late for that. I am seeing the Endo on 1st July.

Anyway if this latest reduction puts me into an even worse state I will simply go to the hospital. Not something I would look forward to but there at least you can have quick test results and see all the specialists you need at short notice

[ingemlb]

Well I certainly stirred things up even more with going to 20 mg of Pred. Yesterday was bad today was agony. This new pain is in the side, level of waist, just below ribs on both sides of the body. Slightly higher up than the flank pain I had previously.

Anyway gave in today and started on the Tramadol again. So now taking Panadol Osteo and Tramadol. The Tramadol takes the sting out of the pain but I am pretty well stuck to resting.

On tuesday my Rheumatologist is in his clinic so I plan to ring his secretary and see if he can call me back to chat about this. My suggestion will be he books me into hospital for a few days to stabilise and do further tests to figure out what the pain is due to. Also hopefully stabilise the blood sugar. I need to really figure out if it would be better to cut the insulin in half and take one lot in the morning the other at night. Not sure if that is possible with the novamix. but this one dose for breakfast doesn't seem to keep the blood glucose very stable. They hypos are gone now it's keeping the sugar low enough the other thing that worries me is when the sugar is high I tend to get increased issues with the peripheral neuropathy. But then again I don't know if that is part of this withdrawal/flare business or the sugar. All I know is my feet are tingling badly part of every day.

So summary of symptoms: terrible fatigue; weakness in back of head/neck/shoulders and back; severe pain in sides (both) near waist ; recurring stomach spasms and pain that does not react as quickly to my usual fix for it; bad tingling in both feet; constant runny nose - mostly it's clear then a few times a day I blow out a thick yellow mucous, once or twice scabby crusty mucous and some small blood clots, sometimes followed by bright red blood but very small amounts. Just enough to cover a tissue. Eyes are occasionally a bit inflamed but mostly ok. Teeth are very sore. I have been using the bicarbonate of Soda for washing them for a month now but it has not fixed the sensitivity. Have postponed going back to the dentist due to all the other issues. My teeth are fine until something cold hits them then the pain is quit bad. I will go back to normal sensodyne toothpaste and see if that fixes it The pain is mainly in the bottom row of teeth. Eating salads is almost impossible. Hot food doesn't seem to bother me. Well that's about it. Wish I could understand it all a bit better

[windchime]

Hi Inge,

I don't think I mentioned this before, but I too have the aches and pains mostly through my entire back. This is since coming off 20 mg of pred. That seems to be the magic number to keep it at bay. I'm now down to 10 mg but I'm in pain and may have to go back up. I take an Ibuprofen when necessary, but that isn't too good for the kidneys so I try to tough it through most of the time.

I'm sure you've checked out what kind of problems the pain killers are causing you, or can cause. In case you haven't here is what I found. Tramadol: should not take if you have asthma or breathing problems as it can cause breathing problems, have intestinal blockage or stomach problems, liver or kidney disease. In addition, tramadol is a narcotic which makes it habit forming. Panadol Osteo: seems to be similar to Ibuprofen and is processed through the liver and kidneys. I once asked an ER doc for some tramadol because it helped the pain from the neuropathy in my feet and he said no that it was a bad drug and left it at that. I have no idea what he was referring to, but trust he is right.

Regarding the sugar and neuropathy. I don't believe higher sugar levels affect the neuropathy that quickly. Recently I've noticed that my neuropathy is worse because I have swelling in my feet and lower legs. Could this perhaps be what is happening to you?

Inge I know you want to be off the pred because you're concerned about the diabetes, but look at what other side effects you are suffering from trying to do this. Just about all of the problems you are describing are caused from reducing your pred, probably too quickly. A worst case scenario is you throw yourself into a flare, which I know you don't want. The crusties and things that are happening in your nose are a good indication that things are getting out of control.

Hopefully you will reweigh all the pros and cons of the pred. vs what you are going through now. You were a very sick person for many years and it will take time to recover from this. It will not happen in 6 months. If they put you in the hospital they will probably up your pred anyway to get things under control again.

Sorry if I come across as preaching, but I know that sometimes I don't consider everything and then someone points something out to me and I have an "ah ha" moment. I pray that you feel better, as I know what kind of pain you are in and it's miserable.

[ingemlb]

Thanks so much Cindy. I cant take ibuprofen or aspirin or nsaids due to multiple stomach ulcers. Panadol osteo is just a stronger paracetamol (650 mg instead of 500 per tablet) and in the past I tolerated it well. I know how addictive tramadol isas it took me ages to withdraw from it. The other option is oxycodone an even stronger opiod but that does not seem to help with the pain. My reason for wanting to go back into hospital is that all these specialists who seem to be so difficult to get to see are available every day there and the hospital has all the equipment to test.
I am confused that the blood tests are looking good yet getting all these issues so I felt its been nearly 6 months since diagnosis and maybe its time to decide if the mtx / bactrim combination is working for me.
Then there are discussions re the diabetes management when the pred keeps changing. They have a diabetes educator there and the endo comes every day. I just feel I am not taking the right amount or type of insulin.
And as i said earlier my worry is the longer i stay on high dose pred the less chance of reverting the diabetes.
But you are right. I may have to learn to live with diabetes. More important to control the wegeners.
I just figured if this is all due to pred withdrawal and not a flare maybe i should grin and bear it and put up with some pain meds instead of up and down pred and repeating this roller coaster effect.
Also my view is that until the pred comes down we don't know if the mtx is the right drug for me. But maybe I am wrong. The sinus issue I also had on high dose pred. Asthma is not a problem for me.
I know there are people on tramadol for years for chronic pain so I was willing to risk it for a few days or weeks.i had a break from it for 4 weeks now.
I told my husband tonight the pain is not the issue in itself as I could just rest and control it that way its this not being sure whats causing it that upsets me
I will mull over what you said and see if I get a bit more clarity. Thanks for caring enough to comment.

[windchime]

[BookNut]

It is SO hard to decide which way to go with it all when there are multiple problems involved. I too am worried about prednisone and diabetes. Even on my high fat low carb diet, the sugar goes up a little even on my two week pred taper. Being on continuously is a worry. My husband spent many years suffering with his asthma, and adverse effects of prednisone. He and his doctor finally found the right mix of medicines that would keep him breathing well without the prednisone. He was lucky, but it certainly took patience, trial and error, and a doctor who was willing to try alternative routes. Inhaled steroids turned out to be the answer for him. It sure would be easier if our body chemistries were all alike and medicines could be a reliable as a good recipe. Keep on trying, and we all send our hugs and love your way.

[jvilner]

Thanks for the post-helped a lot! Having tooth sensitivity to cold as well and it started when I tapered to 20mg pred. Thought I was just crazy. Sensodyne toothpaste is helping me a bit. Feel well!

[jvilner]

What's going on with shingles/herpes zoster? Is there an outbreak or something? Seeing a lot abt it on FB and now they are mentioning it on tv here in Israel. This is probably not good news for a weggie?