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stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 8/25/2011 2:29 PM (GMT -6)   
Hi, I am 40yo and have had Crohn's for 22 years. Had an ileostomy 20 years ago and have been on azathioprine for 16 years to keep the Crohn's in remission. I had to start Humira in Jan 2011 to deal with really bad flare as had stopped the azathioprine on advice on GI. Restarted the azathioprine along with the Humira at start of the year.
 
Now comes the bit I want some help with. At beginning of May I weaned off the prednisone and joints are normally stiff for a few days. The pain got worse and worse and seemed to not be the joints alone but also the soft tissue/nerves as well. Some areas hurt all the time like my arms, knees, fingers/thumbs and other areas when I use them. Some days I am in so much pain can hardly walk or move. I take co-codamol anyway due to vertabrae damage in neck some years ago and about once/twice a minth used to taje tramadol when it was really bad. When pain became unbearable I was tolkd by GP to take tramadol as well as co-codamol all the time. Didn't help a huge amount. Then given amatriptalyne (spelling?) as a nerve block to take at night so I could get some sleep, and this has helped in that respect and better than it was. I am now on fentanyl patches as due to short bowel syndrome painkillers not lasting long enough so what little relief I did get wore out well before I could take next dose.
 
My question is, I have antithospholipid syndrome already, Crohn's Disease, CD arthritis, asthma, ezcema - not convinved it is, those small pinprick blood like spots all over top of body/arms, exhaustion and dippy brain with problems remembering simple things/words, low kidney function. All these are immune system problems and my blood tests are all over the place.- do these new symptoms the pain in joint/tendon/nerve areas and exhaustion and dippy brain possibly point toward drug induced lupus.
 
I am more than used to feeling tired from the CD but this is something new. If I want to go out for a meal in evening I have to have a sleep and if I want to go anywhere at weekends it knocks me out for a day or two. Which is a bit of a problem as work fulltime in a stressful/targeted environment. I know from the Humira literature that it has some really bad side effects and would be how my luck goes that I got one :) :(
 
What blood tests would you recommend my GP look at considering I'm on immunesuppressants already? Any advice appreciated as this is starting to get annoying now and whilst I do not want any more illnesses/diseases/syndromes part of me feels like I'm going bonkers as the pain is horrendous and if I know what it is I can deal with it, oh the only thing I don't have is depression - which is something to be thankful for.

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 8/27/2011 4:00 PM (GMT -6)   
Anyone, anything?
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, azathioprine, codeine, immodium, simethicone.

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 8/28/2011 8:28 AM (GMT -6)   
Hi!
My dr. does a slew of blood work every 6 months, and that includes a cbc, vitamin levels, and an autoimmune panel, which is complement, antibodies, dsdna, ana, thryroid, and just about anything he feels like checking off. Is there any chance you could go to a rheumatologist for a workup? It's funny, but I see my family dr, a neurologist and my rheumatologist regularly, and both the PCP and neuro defer to the rheumy. I am blessed because there is a big university teaching hospital with a Lupus research group nearby and that was how I found my specialists. I argue against bloodwork and get lectured that since it is the nature of AI that titres come and go, that it is important to still keep doing the bloodwork to monitor disease activity. I take prednisone and amytriptyline, too. And am grateful my meds help so much. Take care and keep us posted,
suetoo
ps. hope everyone on the US eastern seaboard is weathering the storm safely.

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U and Ambien every night. Advair, Albuterol and DuoNeb inhalers.

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 8/28/2011 9:56 AM (GMT -6)   
In UK, well at my local practice, they will want some vague proof that it is worth referring onto a Rheumy before they do so. I have bloods taken every month anyway due to the azathioprine, I have FBC, U & E, LFT and B12 tested as routine. Thyroid is checked every so often as my mum had problems with hers and so they do it to rule it out, rather than thinking there may be a problem. Will copy out list above and take with me. Like I said I'm not wishing to have anything else wrong but sometimes just knowing there is a dx makes it easier than having no idea what is wrong.

Thanks for your help.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, azathioprine, codeine, immodium, simethicone.
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