Update on Ingemlb

[ingemlb]

I'm glad things seem to be improving in many ways... It's a tough call when decreasing the pred causes symptoms to creep back up. I keep opting for short-term gain over pain and not dropping the pred. I hope you continue to improve and are able to taper down without more symptoms.

Hi Lisa. THink I misread your quote above re the short term gain. So you are saying when the pain strikes increase the pred until it settles? I understood you meaning just put up with the pain so that you can reduce faster for some weird reason. Must be my brain fog

[ingemlb]

Time for an update here.

I managed to keep decreasing the pred and by the time my next Rheumy appointment was due, I was down to 20 mg. Glad now i pushed ahead. He said blood tests looked FANTASTIC but told me now to stay on 20 mg for a month then if the blood tests are still FANTASTIC to taper down slowly 1 mg every 2 weeks. Although this is much slower than I had hoped and will keep me on the pred for at least another 11 months I am listening to everyone's advice and will do as I am told.

Diabetes is now also under control with the Novarapid insulin. I had to increase it drastically. Now taken the pred after breakfast so I then take 24 Units of Novarapid and another 28 units before lunch. Don't need anything further after that. Two hours after dinner the BG goes down on its own and stays down until the next dose of pred. Since using this approach have not had any hypos so ... I am happy so is my Endo.

Had a Gastroscopy yesterday and stomach ulcers all but gone. One remaining one but it is practically healed. AS I have had very little bowel pain in the last few months I am assuming that IBD is also in retreat and that it was all caused by Wegener's which is what my Gastroenterologist thought early in the year.

Only bad news yesterday was that the recent oral thrush had moved into the oesophagus and the stomach so I have been given lozenges to chew on for a month. Maybe I would have been better off swallowing the stuff I was given for my mouth instead of spitting it out. Ah well next time (hopefully there won't be) I will check with the GP if swallowing would prevent the thrush from moving into the digestive tract.

so ahead of me are:

1. Visits with the Nurse Diabetes Educator. Hopefully starting next week.
2. Appointment with the Respiratory Specialist in a couple of weeks. However the breathing has improved dramatically and not coughing much at all so not sure if this visit is still necessary but having made it will keep it to touch base with her.
3. Need to see the dentist. Have tried various things to fix the sensitive lower teeth but can't get rid of the pain. Also the staining is back and I haven to been drinking herbal tea (last visit the dentist claimed it was the herbal tea causing staining) and also he needs to do a cat scan as the xrays's showed a lump in the lower gum area which needs further investigation.

Still undergoing a lot of stress as our son is still in the Psych Ward but making plans which to us are fraught with issues as far as where he wants to live in the future. But we have been told to retreat and let him sort things out himself. So we will see what the hospital comes up with for ideas for him. They have assessed him as "mentally competent" enough to make his own decisions for accommodation so ... nobody can force him back into supported accommodation. Our only option would be to go back to the courts and get a guardian appointed but that would damage our relationship with him even further as he is still angry at having to deal with financial administrators. So a bit of a stalemate at the moment.

Anyway I am very happy with the medical results for myself and the progress and I am doing quite well on the 20 mg of pred. Still a lot of fatigue and not able to be very active but I am not taking any pain meds so that's a huge step forward.

[ingemlb]

Never celebrate too soon. Night before last had one of the worst episodes of chest pain ever and it radiated to the left ear. Same sort of spasm/tightness feeling I used to get with gallstone attacks which were initially misdiagnosed as gastric ulcers before I had any ulcers. Anyway ... I am prone to all sorts of spasms in my digestive system and usually a valium, a buscopan (anti-spasmodic) and if really bad some Paracetemol or Tramadol will fix the problem. This time it was more severe than usual and took a long time to go away. I had never had it radiate to the ear. So I was getting ready to head to ER when finally things settled down.
Next morning I made an appointment to see the Gastroenterologist as she never really spent much time with me after the gastroscopy and I was still not quite with it enough to ask questions. Such as ... if the ulcers are gone and only one left almost healed why is the pain increasing and the spasms more frequent?

I remembered vaguely hearing the nurses read out the results and mentioning oesophagitis. And of course the Surgeon told me about the thrush in the oesophagus and the stomach. So one explanation is the pains are due to the esophagitis which is due to the thrush.

Then the literature that came with the fungilin lozenges tells you to let your doctor know if you have diabetes before taking the stuff. I only hope she remembered after theatre that I am now diabetic.

Hence I felt it safer to arrange another appointment and discuss this in more details. There is not much information around about Fungilin so I have not been able to answer the questions what impact it has on diabetes. I have however seen it can cause liver damage (great stuff) and kidney problems. As if we need any more drugs or diseases that attack those organs!!

And if the Thrush is coming from stuff I am taking such as the antibiotics or other drugs then it is quite likely to return so I best find out how to deal with it and what the adverse reactions of treatment are.

Anybody else here have problems with recurring Thrush? Think I will start another thread for Thrush

New thread: Thrush in the Mouth and Digestive Tract

[mrtmeo]

Hi inge,
My mom is tapering off valium and I think the valium may have contributed to her ulcer and gastritis because it can relax the stomach sphincter.
My mom had an EGD showing barrett's esophagus too and she was on protonix for 2 months.
She very rarely ever had any acid pain, so she never knew she had reflux.
She is also, on Nystatin as a prophylaxis to keep her from thrush for the vasculitis treatments.
She has been too weak to go for a recheck EGD, so not sure if she still has the ulcer or not.
I hope you can get some relief soon.
acid reflux can travel up the eosophagus carrying pepsin enzymes that eat away at the tissues.
I have a thread explaining this with trials using sodium alginate and alkaline water.
http://www.wegeners-granulomatosis.c...tenosis-2.html

[ingemlb]

thanks Mr. Meo. I will check out your information.
In my case I have been on more regular Valium this year since treatment started than ever before when I would take maybe one valium once or most twice a month. However the ulcers have healed and the bowels seem to have healed too. So in my case it can't have been valium that caused it as I have never been on regular Valium and definitely one drug I don't need to "wean off" as I take it only if needed.

Since the above post I have seen the Gastroenterologist who told me that the results of the biopsy showed moderate to severe oesophegitis, severe reflux and a bit of thrush in stomach and Oesophagus. I told her I was surprised about the reflux as I am not aware of it since taking the Somac. Before I had it really bad and put up with it for years. Anyway she said it may be washing up only part of the way and hence I don't notice it. She asked me had I considered taking 2 of the Somac (already on 40mg) and I was a bit puzzled wondering what would make her think I would consider it and hence didn't follow up and ask should I now take it twice a day. Her advice was to let the GP manage it and that struck me as odd as how on earth can the GP see if it has improved.

Anyway after that I had an appointment with the Respiratory Specialist about my continuing coughing and loud breezing which early this year we blamed on the Sinus issues (post nasal drip). Another thing I discovered by accident last year when researching on the internet. It occurred to me then that all the stuff running down the back of my throat must be going somewhere so I looked up cough and sinusitis and discovered it is one of the major causes of chronic coughs.

With the Respiratory specialist I mentioned the gastroscopy and that I had the results with me. Didn't think she would be interested as I wasn't aware of a connection between stomach and lungs. But she asked for them straight away and said aha well ... the bad reflux could also explain your cough. Apparently the Oesephegus ends just opposite a small opening into the windpipe that runs into the lungs and she said reflux can cause stomach contents to enter the lungs and cause the cough. SO I researched that and found it too mentioned as one of the most common causes for chronic coughs. So ...I have bad post nasal drip and bad reflux so no wonder I am coughing.

This Respiratory specialist told me to a) take the somac on an empty stomach to stop the stomach acid from building up when you start thinking about eating and b) to take it twice a day. She also gave me a steroid nasal spray to attack the sinus issues so she is hoping in a few months time the reflux will have improved, the oesophagiitis healed, the sinus's slowed down. Hopefully much sooner the thrush will have cleared. I only need 2 more days of tablets for that but a bit hard for me to tell if it is gone.

When I told me GP he was now managing all this mess he said well I don't know what I can do other than send you back to her for another gastroscopy in a few month's time. My sentiments exactly

[mrtmeo]

Hi inge,
doesn't it take a week or so for pantoprazole to start working well?
I am thinking my mom has the same issue and may have to go back on the ppi because she has an ulcer too.
Her dr stopped the protonix 7/8/14, so she hasn't had any since.
However, that dr didn't really know about her vasculitis issue and determined it to be due to nsaids.
I wonder if she could take an OTC ppi to see if that corrects the issue.
She has emphysema and vasculitis in the lungs, so she can't afford to get aspirated pneumonia.
I just looked up ppi's and the FDA only recommends ppi's be taken no more than three 14 day rounds per year.
I guess I will have to go back to the sodium alginate idea which seemed to help.

[ingemlb]

mrtmeo I have been on Somac (which is for the stomach acid) for almost 5 years and thought it had helped but apparently not. It didn't stop the stomach ulcers becoming chronic. I guess we now know they were due to Wegener's. So the good news I got via the gastroscopy was that the ulcers are gone which I am putting down to the Wegener's treatment (as nobody had any idea until my diagnosis what could have been causing them) but the inflammation of the Oesophegus seems to not have cleared. Hence the doubling of the Somac. I was told by the Respiratory specialist it would be a few months before I would notice any improvement so I am assuming in 6 months time will go for another gastroscopy unless the symptoms become worse again.

I am assuming your ppi above is similar to my Somac?

I was told when I was prescribed it I would have to take it for life. I am tempted once I have this under control to investigate dietary options to reduce the acid and see if that works.

Nobody here says to take Somac for 14 days so it must be some different kind of stuff. Nexium is the other remedy. Both my husband and I had been diagnosed with Barrett's Oesophagus too and were also told to take the Nexium or Somac for life.

[mrtmeo]

Hi Inge,
Somac is the same as Protonix here in the states aka pantaprazole.
It is a proton pump inhibitor.
Under medical uses, it says the FDA only recommends 3 14 days uses per year.
Proton-pump inhibitor - Wikipedia, the free encyclopedia

PPI's lower stomach acid which can cause pathogens, such as C.diff and salmonella to grow.
Also, long term use can cause rebound acid reflux.
This is when the body compensates for the lower stomach by making more acid and when u stop the ppi, you endup with more stomach acid than before.
This is why the have to be tapered off.
I am glad your ucer is gone.
That is great news.
My mom's ulcer could very well be from vasculitis because they also, had found some surface blood vessels in her colon that at one time could have been bleeding.
Her ulcer they found was not bleeding at that time too.

[mrtmeo]

Hi inge,
Have u found relief of the post nasal drips since starting the Somac?

[ingemlb]

Well I started two things together. Increased the Somac to 40mg 2x a day (had been taking 40 mg 1x a day for nearly 5 years) and a steroid nasal spray and it seems to be improving. The doctor told me it would take a few months before I would notice any difference but it seems to be improving. Some days more than others. I will see how it progresses