Update on Ingemlb

[drz]

I have had sores in my mouth and on my tongue. I only take the non sulfa part of Bactrim (trimethoprim). My sores were also treated by mouth wash and a stronger version of my acyclovir meds that I take daily. I believe such mouth sores can be part of our Wegs or side effect of our suppressed immune system too. I was also advised by a dental hygienist on this forum to avoid toothpaste with sodium lauryl sulfate which is harder to find.

[ingemlb]

thanks DRZ. I will check the toothpaste ingredients. Have not heard of the bactrim you mention will investigate. It looks like the whiteness is fading so I will see if after it is gone it comes back I will have to dig a bit deeper as to the cause. Will start eating yoghurt again more regularly. I stopped it a while ago.

But yes I had mouth sores and a tongue ulcer when I was diagnosed. But not the white covering over the tongue. The tongue ulcer that time was massive and definitely Wegener's related as it settled eventually after starting prednisolone.

[LisaT]

You can find SLS-free toothpaste in the natural / organic toiletries section usually. Jason's is one of the bigger brands but the others are escaping me right now. They're also fluoride free (another confusing controversy. I hear terrible stuff about fluoride, but my hour other who is a dentist says it's all hype...)

[LisaT]

By the way, it's best to avoid SLS in soaps and shampoos too. They add it to create suds, but it's toxic and can cause cancer. Like so many other ingredients we are sold for profit at our own expense.

[ingemlb]

thanks Lisa. I had to go back to the "sensodyne" toothpaste to dampen the pain in my lower teeth. I have used this stuff for over a decade and never got thrush from it so I am not convinced its the toothpaste. I tried using Bicarb Soda but it did nothing for the pain so gave up on it. But if this doesn't go away will try to find a sensitive organic toothpaste.

[drz]

I use Sensodyne Pronamel tooth paste which is supposed to help protect tooth enamel from the damage cause by acid from GERD. It does contain fluoride but does not list SLS on the tube as one of its ingredients. I think they have a version without fluoride but wonder if it would work as well to protect teeth from erosion by acid. I never call the company number though to inquire about its ingredients. Most toothpastes seem to list SLS if it is one of the ingredients. But on the internet I found it listed as one of their ingredients with this description:
Sodium Lauryl Sulfate

Sodium Lauryl Sulfate helps water and oil mix so they can be rinsed away. As a surfactant, sodium lauryl sulfate works as a cleansing agent, helping to clean bacterial and food residues from the surfaces of teeth.

http://www.livestrong.com/article/24...ne-toothpaste/

But on Pronamel description by sensodyne I found this listed for ingredients:

Active Ingredients: Potassium Nitrate (5%) (Antihypersensitivity), Sodium Fluoride (0.15% w/v Fluoride Ion) (Anticavity)

Inactive Ingredients: Cocamidopropyl Betaine, Flavor, Glycerin, Hydrated Silica, PEG 8, Sodium Hydroxide, Sodium Saccharin, Sorbitol, Titanium Dioxide, Water, Xanthan Gum

http://www.drugstore.com/sensodyne-p...eeth/qxp209206

So my guess is no SLS in this brand or else they use some equivalent which may do same thing.

[ingemlb]

It’s been a while since I documented progress here and in the meantime had been updating a couple of other threads with specific topics

Steroid Induced Diabetes Management
Fast sliding out of control. Stress, stress, stress.

Since updating here I have managed to get rid of the oral thrush. Just continued using the liquid I was prescribed and eventually that did the trick.
I also visited my Gastroenterologist and she has decided to book me in for a gastroscopy last day this month. Something to look forward to (not).

Main thing to document here is that I tried to call my Rheumy on Tuesday (the day he is in the clinic) but he didn’t get back to me. I wanted to tell him due to all the stress going on I would prefer to spend another week on the 30mg of pred as I was finally pain free but actually still not able to do a lot around the house. However in the end I decided to try reducing so yesterday went down by 2.5 mg to 27.5 mg and today the sharp pain in the middle of the back has returned also the weakness on walking around in my back is a lot worse. OF course I have to consider the enormous stress we have been under. Today both my husband and I were totally exhausted and ended up sleeping all afternoon. If it had not been for the meds and insulin I think I would have preferred to just stay in bed.

I will give myself a couple of days but if it continues I am going to increase back to 30 mg.

Whilst I was on the 30mg I noticed during the last week a big improvement with my sinus issues. Cough practically gone. Noisy raspy breathing gone. Blowing out a lot less rubbish of of the nose. So I have a feeling I need longer on the higher dose to combat this disease.

On the stress side. Our older son accompanied me to seeing my counsellor last monday and that went very well. It was good to hear his side of how the stress at home was affecting us. She agreed with a lot of what he said. As he works in a drug and alcohol detox unit helping young teenagers he has had a fair bit of training on how to manage stressful situations. Trouble is he is so overloaded with study work and his own family that I can’t possibly foist our younger son into his care. It would work great because he would know better how to deal with him

[LisaT]

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.

[ingemlb]

Hi Lisa. If short term gain were the result I would opt for i too. But so far every time I decreased the pain got worse each day and I ended up back on strong pain killers. I put up with it for weeks before getting the doc to increase the pred again and usually within days the pain settled. This last time I must have waited too long because it took over a week nearly 2 weeks for the pain to go away after increasing back to 30. I found then after another week the sinus symptoms also started to improve and the horrible breathing and coughing. So my thoughts are that I still need the 30mg a bit longer as it seems to be helping slow down the disease. Anyway just a theory. I had thought it may all be withdrawal but then it should have slowly settled down which it didn't.

[ingemlb]

can't believe it's the pred reduction but woke up today with a low grade fever copious yellow mucous coming out of my sinus and coughing up heaps of it. Chest sore as well. Must be a cold or flu coming on