Head Pain

[Col 23]

Hello everyone..
Im in Darwin, staying with my daughter for a few weeks. The week before I went I was checked by Rheumie and she lower my dose of Pred from 30 to 25 mg. I had been slowly tapering from 80mg since January2010.

After a week I woke up with alot of head pain on left side of face that was unbearable. Went to Royal Darwin Hospital, bloods done again, mix up with them,told I had no RBC and then they discovered my bloods had got mixed up with with someone elses as they were about to inject protein and blah blah. The Doc was on it anyway and was doing a double check as they were about to draw more blood and add a cranula she advised of the mix up. What a relief. Anyway the ESR was good. After consult with Royal Perth Hospital they decided I needed to go back on 30mg and review in 2 weeks. I was extremely fatigued prior to the head pain and my nose was starting to drip again. Sometimes this whole thing confuses the hell out of me. Im still on 25mg of Methotrexate and taking pain relief, Panadol Osti for RA. My knees are swollen and so are my ankles and Im now gained about 9kilos and have a moon face. I have given up putting on makeup as I sweat it off and have to put steriod drops in my eyes 3 times a day and tears 3 times a day. But hey I think Im doing okay. Just really really really disapointed that I had to go up again on the Pred instead of going down again. Ive started having a spa and swimming each day I think this may be helping the RA.
Anyone else had head pain? Also for some reason I find diet coke a must if I need to go to shops or need some energy. I have also spoken to another WG person who advised she was really addicted to it and believed it also gave her the energy she needed to get through some tasks for the day. Anybody else out know about this? Cheers Col 23

[Sangye]

Hi Col-- sorry about your setback. It sounds more like the mtx is not strong enough than a case of needing higher pred again. Mtx takes a couple months to work, so it's still a bit iffy.

Please please please don't use caffeine for energy. You will seriously regret that later (and by later I mean less than 6 months). Fatigue comes from active Wegs, mtx and pred-- all of which beat up on the adrenals. Caffeine drains the adrenals, too. If you increase caffeine while on pred, you will deplete your adrenals at a much faster rate. As you taper the pred, you'll be in very sorry shape. It's very difficult to get the adrenals back after using pred, and it's nearly impossible if you've drained them with caffeine.

[Col 23]

Thanks for the advice Sange. Interesting about increasing the Meth, Ive been on the same dose since diagnoses in Dec 09, thought I was going well and getting into remission. Like I said so confused with this WG. The more I read and hear the more confused I get. Do I put trust in the docs, do they really know or are they just experiement with me. It seems that they are not concerned about all the drugs. Are we really stuck with these drugs? Sorry about all this I think Im just having a rough week.

Im at the stage I dont know what to eat or drink. Although I would love a drink of alcohol it doesnt agree with me at the moment. I find my self craving sweet things. Have eaten buckets of yogurt and lots of toast plus of lots of salad and veg. Never been a big meat eater. Does anybody know what works? I think we need a list of good things to eat and drink for WG. Then a wish list of " sometimes its okay" food. Sometimes Ive just gone with the flow if the body wants it then its for a reason. Could a nutritionist assist? Another person on the team!!
Cheers Col 23

[Jack]

A drop in pred from 30 to 25 should not have caused you problems so I'm not sure what your face pain was all about. Has it gone away? If so, I'd try dropping the pred again.

Sangye is probably right about the effects of caffeine, but I'm in no position to preach, I gave up on my adrenals years ago and need coffee in order to function. I limit my in take to about four cups a day. Sorry Sangye!

[Col 23]

Hi Jack
Thanks for the reply - As this only happened yesterday not sure whats happening, however it was painful enough to take me up to the hospital. ( I will never go unless I really cant stand the pain). Im just so confused and still learning to monitor the bod. Head and Pred who knows. The diet coke has also helped me get through the day. Although I will probably limit it now. I also love tea and heard thats good for flushing the kidneys however who knows if that any good with WG. Hope your okay. How is the rib? I havent been on for a while and just read about it. Hope its healing okay. Cheers Col 23

[Jack]

Thanks for inquiring Col.
Ribs are still hurting, but not too bad today. I have a suspicion that I sometime re-break one with coughing before it can heal properly. Went to the hospital this morning for a routine check over and we went through all my blood test results. Everything looking good! Just need to eat a bit more.

Life with Wegs is full of surprises, usually not very good ones, just take it one step at a time. Symptoms have to move over eventually to make room for the new ones.

[Col 23]

Hi Jack
That cough must be pretty damn bad. Do you get a break from it or is the cough now an attachment? New experience for me to take one step at a time since Ive been running most of my life. The Weggie thing brought me back to a crawl and Im now grateful I can take a step. Just wondering Jack as Im not up to date how long have you had WG?
cheers Col 23

[Jack]

I've had it for 25 years, so I've experienced most of what it has to offer, but not all of it from reading the posts on here.
The cough is permanent due to lung damage - nothing more can be done. The steroids have also given me severe osteoporosis - hence the rib breaking, but they have given me quite a few good years too.

[elephant]

Like the old saying, " take the good with the bad." Prednisone, has done the same. It slaps you in the face to wake you up, but then it leaves a mark!

[Sangye]

LOL-- that's a perfect saying, Elephant! Gotta remember that one.

Col, I sense you're struggling trying to find some stable ground with all this. I totally understand and I imagine most people on here feels the same way to some degree.

The uncertainty aspect has been the most difficult thing for me to deal with. I used to know my body well--what it needed, what was good or bad for it. It was like I had an owner's manual before, and now I have another body and no manual. I'm not able to plan one day to the next. Friends tell me their plans for the weekend (or a month from now!). I'm amazed they can do that.

The only stability I've been able to find is in the present moment. That's one of the goals of my particular path in life, so in that regard Wegs has been my best friend. It's forced me to get more and more present. The moments when I remember that are the least stressful for me. The rest of the time I'm leaping into the past and the future and making myself all kinds of nuts.

Take it in little pieces and see what you can do to find stability here or there. A nutritionist is a wonderful idea. Having someone tell you "Eat this" and "Don't eat that" can take a lot of stress away. Just make sure they're familiar with inflammatory diseases and have experience treating people with chronic illness since we have particular nutritional needs.