Update on Ingemlb

[ingemlb]

If you find out the reluctance of the Bactrm DS by the doctors, I would love to know. Even thought Im doing good on it, Ive just heard it too many times and am interested. So if you find out, let me know! :-) Take care!

Hi Lilly. It's not my doctors who are reluctant re the bactrim ds and mtx mix. It is the doctors being seen by some of the other Australian members and I read on the web that Canada for instance has banned using them together. However research I have studied up was focusing only on stats where people taking both reported problems making it difficult to see the percentage of those taking both who are not having issues. I had taken bactrim before without problems and so I am hoping I am one of those not affected. I also found out that it's a common drug prescribed for UTI's and as those are a concern for me recently I am glad to be on the bactrim. I wasn't convinced the antibiotics I was given at the hospital got rid of the UTI. I had my first one early November. Actually only had symptoms for a few hours but took 2 courses of antibiotics was then told to wait a month and be retested. Again absolutely no symptoms but tests showed after a month without antibiotics the UTI had returned. So went on 2more courses of antibiotics. But as I am now also diabetic (thanks to the pred) I don't believe the UTI bugs are totally gone so am happy to stay on longer term bactrim. On top of that it is definitely easing the sinus issue and as I have a long history of coughs, bronchitis, pleurisy, pneumonia and bronchial obstructions it's even better for me to stay on it for now.
I am glad you found my posts helpful. I sure learn a lot from this forum. Can't figure out why so many doctors get nervous about belonging to online forums. You would think when dealing with a rare disease they would welcome any help available. Must be an academic cultural mindset thing! Anyway I am sticking with the forum. It has calmed me down a great deal and if sharing my progress can help others even better still

[windchime]

A trigger point therapist is a massage therapist with knowledge of trigger points. They've usually been through additional training. The way trigger points are diagnosed is a process of elimination. Basically if it isn't any of the other things then it's probably musculoskeletal. it could be a pinched nerve in the lower back and you will need an MRI for the doc to diagnose this. Good luck with it all.

[ingemlb]

Update for today.
1. Saw my Psychiatrist today and discussed that there are some improvements. Still getting panic attacks and anxiety but no longer weeping at the drop of a hat then promptly had the tears gush out during the discussion LOL. Anyway I told him I was once again having severe insomnia and feeling like a zombie wanting nothing more than to sleep and the minute my head hits the pillow my mind is racing away and won't let me drop off to sleep. My body is working as fast as my mind. I tend to race through the house (pain permitting) and only stop when I am ready to drop dead with exhaustion. He thinks its the Pred. He has prescribed more Melatonin and Valium (to be taken ad hoc as needed the valium that is) and will see how things are in a month's time before trying out something to calm me down. The problem is the stuff he has in mind doesn't like to live with the Tramadol and I don't like the idea of losing Tramadol as one of the few pain meds at my disposal (due to stomach ulcers can't take most of the others). I could swap the Tramadol for Oxycodone but that stuff is even more addictive so not really sure if that's a good idea right now. Anyway I am hoping that by the time I see him next I will know what is causing these extra pains and have found a way to deal with them and that I will have dropped the Pred dose again and maybe that will be enough to calm me down.

2. Saw the dentist re the staining in-between my teeth. Here is the summary I posted on the Australian Wegner's FB page (saves typing it all again):
"Who would have guessed ???? saw the dentist today and the nasty stained plaque removed from between my lower teeth (and any other plaque that was not as obvious). I took along my Wegener's diagnosis report and they did some X-rays and found something underneath my lower left corner tooth that needs further investigation. They wanted to do a CT scan to see it better but because I already had one on Thursday and most likely having another one of the spine later this week (after seeing the Orthopaedic surgeon on Wednesday) they decided to confer with a dental surgeon and get back to me and maybe postpone the ct scan a while.
This dental clinic are very good and they specialise in people with serious health issues so are very thorough. Anyway the head honcho came in and when I asked him if it was the drugs I am on causing this weird staining between my teeth he said no he didn't believe so, more likely by something I am eating or drinking. So we went through all the options and the culprit apparently is the copious amount of herbal tea I am drinking!!!! That was about the least likely suspect and I only mentioned it when he mentioned it could be coffee which I don't drink!!! I have increased my consumption of herbal tea as I drink it without milk and I picked up a lot of very nice varieties from a german importer earlier this year. One is a calming tea, another a stomach smoother. The combination of herbs are very nice so I tend to drink a few cups a day.
Anyway the damage has been cleaned up and I was told in future I was to not rinse my mouth after applying toothpaste. Use the Sensodyne and spit it out but leave the residue in the mouth to protect the teeth. Never heard of that before. As I do a lot of flossing to get rid of food stuffs between my teeth what this means is that at the end of it all I will simply have to apply more toothpaste so I can leave it in the mouth "

[mishb]

Interesting about the staining and leaving the toothpast in

Can you still drink the herbal teas or have they recommended not to?

[ingemlb]

Can you still drink the herbal teas or have they recommended not to?

They didn't say. Just said come back in October for another cleanup. I guess they don't mind LOL as it means more work for them The staining is not an issue I guess. The Plaque is. I am not sure if the plaque comes from the teas or from other foods I have been eating so I need to maybe brush several times a day to reduce plaque buildup. No plaque ... nothing to stain

[drz]

I drink a lot of tea and don't have any problem with staining. I do get my teeth cleaned every 3-4 months to remove any plaque build up.

[ingemlb]

I drink a lot of tea and don't have any problem with staining. I do get my teeth cleaned every 3-4 months to remove any plaque build up.

That is probably the trick. Frequently removing plaque.

[ingemlb]

Just back from seeing the Orthopaedic surgeon regards my behind knee and flank pains. Just a rehash:

1. Behind knee pain started off a few weeks ago as a mild pain/discomfort then suddenly last wednesday it became quite severe.
2. Flank pain started 2 weeks ago also as a mild discomfort then suddenly on the same day (wednesday 1st April) became quite severe.
3. Thursday 2nd spent the day in ER at the local hospital having a CT scan, blood and urine tests. CT scan showed no kidney stones, no kidney infection, no bowel issues. Blood tests and Urine tests seemed to show inflammation and also some blood and protein in the Urine. However they focused on the kidneys due to the flank pain as they knew I had an appointment with the Orthopaedic surgeon this week for the behind knee pain. They got in touch with my Rheumy and decided (based on blood test results and CT scan) that it was not Wegener's related and discharged me with cause unknown. I was told if I wanted to bring forward my visit to the Rheumy I could head to the Epworth (Private hospital) where he could visit me. He was not able to visit me at the Public ER.
4. Friday (3rd ) I saw my GP and he studied the results and said definitely no need to worry about the kidneys. If there was kidney disease it would most likely be pain free and that in his opinion this was all muscular / skeletal or referred from the spine. If it was referred from the spine that could mean both areas were connected, i.e. the knee and flank pain could be originating from same source. He said the Orthopaedic surgeon is not a spinal specialist but he could order tests to rule out the spine.
5. Tuesday (8th April - yesterday) the knee pain also was felt in the front of the knee. I was very exhausted. Noticed a lot of fatigue during the last week and constantly breaking out in sweat on exertion. Several times I caught myself in a hypo so will try to remember to measure the sugar next time the sweating sessions start. Could be I need to reduce the Insulin seeing the pred was reduced.
6. My pred was reduced from 40 to 30 mg on Tuesday 25th. The flank pain (mild version) started about the same time. The behind knee pain (mild version) had been going on for several weeks. A week later both became severe and I am on Tramadol and Panadol Osteo ( a 1300 mg version of Paracetemol). The feelings were that if this was a flare due to pred reduction it would have happened sooner not a week later.
7. Today I saw the Orthopaedic surgeon (Wednesday 9th here now) and he did a lot of manipulation of both areas. It was of course difficult to feel the impact because I am on pain meds. However certain types of movements triggered some extra pain. He is convinced it's all spinal and either some physical issue (disc or growth) or it's sciatica or nerve pain caused most likely by inflammation. In which case it could well be linked to the pred reduction. He has ordered an MRI and I am having it done on this coming Sunday at the Epworth. In the meantime I will take things a bit easier and rest up and if things get worse I will ring my Rheumy and maybe even book into the hospital for further testing.
8. Another issue that occurred yesterday was my left hand kept "freezing" in an awkward position with the thumb turned inwards towards the palm. This went on for about 30 minutes. The surgeon today felt it sounded like a spasm. NO idea what would be causing that but I am beginning to think flare is behind everything. It would be a great shame as I was happy to go down with the pred
Anyway will see what happens the next couple of days.

[ingemlb]

Getting a bit nervous about the MRI which I am having tomorrow afternoon. I hated the last one and it was only of my hand but it was done late January when my entire body was a mess of pain and before I started on the PRED. I had to lie on my stomach and my feet were at a very awkward angle, my hand above my head so they could get the hand into the machine. It brought on the joint pains in my feet so after 40 minutes of the MRI I was in a bigger mess than before it and the pains never stopped until I started the pred a few days later.

all it showed was massive inflammation in the had. They wanted to do the left had as well but I wasn't in the mood for another 40 minutes of torture. Also they would have had to cut off my wedding ring as the joints were so swollen it wouldn't come off. So I said that the pain and symptoms were identical in both hands hence doing one had ought to be enough and they left it at that.

This time I am having an MRI of the Lumbar Spine. so does that mean I will be immersed in the machine the entire time? I feel claustrophobic just thinking about it

I managed with a lot of soap to get my ring off.

Has anyone recently had one of those MRI's? I believe it can take from 40 minutes to an hour. The noise alone can drive you mad!! I am going to take something to calm down before I go. I would prefer they knock me right out!!!

Terrible to be so nervous about a test!!!

I still have the same symptoms as a week ago. Pain is reasonably controlled by tramadol and Panadol Osteo. But I can feel it get worse when I am due for the next course. I am either totally exhausted or totally wired. I have spent an entire week sweating like mad all day with the air con on even on a cool rainy day. I had to battle insomnia but last couple of nights been sleeping in short bursts. Then when I sit here I feel like I am falling asleep.

Getting a lot of spasms in my feet today. Probably lacking in salt after all that sweating! Hands have stopped spasming.

Well this time tomorrow it will be behind me. I hope it will show one way or another what is causing this pain

[Alysia]

Hi Inge.
I had MRI of the brain lately.
you should better come with cloths without any metals. I wear tights and t-shirt. otherwise they will get you their robe, which is much less comforble. you will just have to take your bra off.
as for the noise, check with them if they can ring some music to you. somthing calming. I have good avility to distract myself from annoying stimulli so I was there but not really, I was in my "mind". sheck if you can do it. like wondering with your thoughts to other places, day-dreaming.
good luck !