Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Just thinking back over the last year and I've had nothing but set-backs and other health issues.
I had a weird large swelling/lump on my neck come up in Feb - x-rays, ultrasound, CT scan and now just got the results of my MRI.
We still don't know exactly what it is. Ruled out Lymphoma or anything to do with the lung - so that's good news. "Vascular fatty lession" or possible "Vascular Deformity" causing swelling. The problem is that the area is very fatty and it obscures the scans so much they can't really tell. Its also ill-defined so they can't really biopsy it. I've seen two ENT's and the recommendation is that because it causing no pain to just leave it. Its likely not a tumour or cancerous however without a biopsy they can't fully rule it out. Oh Yay! I've been so stressed worrying about this that I'm on Pristiq for the depression and anxiety. At least I know that I don't have Lymphoma which makes me feel a bit better.
-So I took a course of antibiotics in Feb to make sure the lump wasn't a weird infection - off the Enbrel for two weeks.
-Next box of Enbrel I took - didn't work at all - something must have happened to it - got too warm of something. - so that was 6 weeks without Enbrel - major flare.
-Got a short course of prednisone to get it under control but ever since having major tendon issues in the shoulders. Pain keeping me up at night so I had to start taking Tramadol to sleep.
-Started physio for the shoulders as they thought the rotator cuff muscles had weakened allowing the joint to slip out of place pinching and chaffing the tendons. I thought I was taking it easy - but had major tendonitis attack in the right arm after first session. Second session we used both arms and I got a bad case of trigger finger on the middle left finger.
-June ER visit to get my finger straightened after 3 days of it being stuck. They had to freeze the base of my finger twice (two different types) which was a total of 8 shots in the base of my finger. I still felt it when they wrenched it straight.
-I spent the next couple of weeks wearing splints on both hands (ring and middle fingers) because they were all starting to trigger and the hand therapist said I needed to let them heal.
-August - I've been suffering with sporadic bouts of what I thought was IBS ever since my initial course of MTX over the last five years. I thought it was just a result of all the meds and that's just they way it was gonna be from now on. I went camping this summer and apparently picked up an intestinal parasite from the lake water - Giardia or Bever Fever. It took over a month to turn into something noticeable but all of a sudden WHAM. Diarrhoea then nausea, then vomiting, then cold sweats, weakness, fatigue. It got so bad that I was spewing from both ends almost uncontrollably.
Sept 5 - was day three before the vomiting - I already new something was terribly wrong so I went to the ER. On the holiday Monday - that was fun! 4 hours later they hang a bag of saline and the nurse butchers me with the IV on my inner arm - the bruise has now just gone away. She almost made me pass out and I'm not a wimp about needles. They had to do a new IV in my hand cause she damaged the vein so badly. They took a stool sample and some blood. Nothing came up in the blood so they send me home and told me to check with my GP in about 3 days for the result of the stool cultures.
-The basic results came back with nothing on the Thursday - they didn't tell me that there was still a parasitic test pending. I got a call the next week - still sick - from the ER doc telling me I had a parasite. The lab had snail mailed the results to the ER docs home address instead of the hospital or my doctor WTF!!!. So it took 10 days to get the results. Luckily it was easily treated with Antibiotics another 3 weeks off my meds in total. Another short course of prednisone so I could go back to work. I missed a full week and another week only half days.
-I was just starting to get better and then I come down with the first fall cold which was sore throat, sniffles, then fever and now major headache! I hope my local government gets their butt in gear soon and gets the flu shot out. Its not available until mid October here. I know the flu is just around the corner and thats the last thing I need at this point!
So just a warning about parasites the Giardia is what made be really sick but the second stool sample they ran came up with another parasite Blastocystis as well which may have been responsible for my IBS symptoms for the last few years up to 40% of IBS patients test positive for some level of Blastocystis. The jury is still out about how much disease it really causes but it has been linked to higher levels of Interleukin 8, which also happens to be one of the key inflammatory cytokines in RA. The infection may be responsible for the severity of my RA symptoms and why its been a little difficult to treat.
RA patients on immune suppressing meds should get routine stool examinations every couple of years to check for infections like parasites. I would strongly recommend it to everyone even if your bowels are not all that symptomatic.
Please tell me its OVER!!!! LOL! Geesh!
I had a weird large swelling/lump on my neck come up in Feb - x-rays, ultrasound, CT scan and now just got the results of my MRI.
We still don't know exactly what it is. Ruled out Lymphoma or anything to do with the lung - so that's good news. "Vascular fatty lession" or possible "Vascular Deformity" causing swelling. The problem is that the area is very fatty and it obscures the scans so much they can't really tell. Its also ill-defined so they can't really biopsy it. I've seen two ENT's and the recommendation is that because it causing no pain to just leave it. Its likely not a tumour or cancerous however without a biopsy they can't fully rule it out. Oh Yay! I've been so stressed worrying about this that I'm on Pristiq for the depression and anxiety. At least I know that I don't have Lymphoma which makes me feel a bit better.
-So I took a course of antibiotics in Feb to make sure the lump wasn't a weird infection - off the Enbrel for two weeks.
-Next box of Enbrel I took - didn't work at all - something must have happened to it - got too warm of something. - so that was 6 weeks without Enbrel - major flare.
-Got a short course of prednisone to get it under control but ever since having major tendon issues in the shoulders. Pain keeping me up at night so I had to start taking Tramadol to sleep.
-Started physio for the shoulders as they thought the rotator cuff muscles had weakened allowing the joint to slip out of place pinching and chaffing the tendons. I thought I was taking it easy - but had major tendonitis attack in the right arm after first session. Second session we used both arms and I got a bad case of trigger finger on the middle left finger.
-June ER visit to get my finger straightened after 3 days of it being stuck. They had to freeze the base of my finger twice (two different types) which was a total of 8 shots in the base of my finger. I still felt it when they wrenched it straight.
-I spent the next couple of weeks wearing splints on both hands (ring and middle fingers) because they were all starting to trigger and the hand therapist said I needed to let them heal.
-August - I've been suffering with sporadic bouts of what I thought was IBS ever since my initial course of MTX over the last five years. I thought it was just a result of all the meds and that's just they way it was gonna be from now on. I went camping this summer and apparently picked up an intestinal parasite from the lake water - Giardia or Bever Fever. It took over a month to turn into something noticeable but all of a sudden WHAM. Diarrhoea then nausea, then vomiting, then cold sweats, weakness, fatigue. It got so bad that I was spewing from both ends almost uncontrollably.
Sept 5 - was day three before the vomiting - I already new something was terribly wrong so I went to the ER. On the holiday Monday - that was fun! 4 hours later they hang a bag of saline and the nurse butchers me with the IV on my inner arm - the bruise has now just gone away. She almost made me pass out and I'm not a wimp about needles. They had to do a new IV in my hand cause she damaged the vein so badly. They took a stool sample and some blood. Nothing came up in the blood so they send me home and told me to check with my GP in about 3 days for the result of the stool cultures.
-The basic results came back with nothing on the Thursday - they didn't tell me that there was still a parasitic test pending. I got a call the next week - still sick - from the ER doc telling me I had a parasite. The lab had snail mailed the results to the ER docs home address instead of the hospital or my doctor WTF!!!. So it took 10 days to get the results. Luckily it was easily treated with Antibiotics another 3 weeks off my meds in total. Another short course of prednisone so I could go back to work. I missed a full week and another week only half days.
-I was just starting to get better and then I come down with the first fall cold which was sore throat, sniffles, then fever and now major headache! I hope my local government gets their butt in gear soon and gets the flu shot out. Its not available until mid October here. I know the flu is just around the corner and thats the last thing I need at this point!
So just a warning about parasites the Giardia is what made be really sick but the second stool sample they ran came up with another parasite Blastocystis as well which may have been responsible for my IBS symptoms for the last few years up to 40% of IBS patients test positive for some level of Blastocystis. The jury is still out about how much disease it really causes but it has been linked to higher levels of Interleukin 8, which also happens to be one of the key inflammatory cytokines in RA. The infection may be responsible for the severity of my RA symptoms and why its been a little difficult to treat.
RA patients on immune suppressing meds should get routine stool examinations every couple of years to check for infections like parasites. I would strongly recommend it to everyone even if your bowels are not all that symptomatic.
Please tell me its OVER!!!! LOL! Geesh!
You sound like you have been through the mill over the last while. I really don't like the idea of parasites. I don't do the outdoor camping anymore - just in a trailer, with bottled water for drinking. I hope you get through all this, and the cold and the flares.
So I'll tell you it is OVER,but I am not psychic, more of a hope and a prayer for you, Lynne!
I too have been battling with my neck/shoulder. My swell/lump is where the clavicle and neck connect. Have had CT scan, MRI, antibiotic - with nothing found. I have the pinched nerve where it goes up my head and down my shoulder blade. We will have to keep tabs on each other and keep trying together to find out what the heck is wrong!!
I continue to hear how susceptible we are having RA. I just hate going to a public restroom........ Or, sorry, to some friend's home-bathroom....... But now even some lakes (to swim mind you - hehe). We can be confined at times due to physical difficulties, but to feel unable to go out due to what we can come in contact with is not right!! I guess we all have to start carrying Lysol disinfectant and hand sanitizer everywhere we go!! We will need very large purses from now on!! Oh, wait, we cannot physically handle the large purse...
I will continue to keep you in my thoughts and prayers! Hugs to you
She test for thing the GP and Rheumie don't. So it kind of round things off.
I find it very strange that the med clinic had made such a huge mistate on sending the results to the Dr home. Maybe that was his way of saying he actually screwed up
sorry your going through all this, thats a roller coaster ride for sure
Oh dear........ that's a really tough year to get thru! I am glad for you that they have (hopefully) figured out what's going on & that you'll be feeling better soon.
Sometimes it feels like we are a perpetual patient at the mercy of health workers who sometimes are having a crap day!
Interestingly, I know of an 11y.o. girl who was diagnosed with Juvenile RA last year after infection type symptoms that landed her in hospital very sick. Anyway, she has had many tests and after being treated for her intestinal parasites she is much better.
Thanks for letting us know about having biannual stool tests. There's so much about this disease that isn't clearly understood but DS mates continue to keep us informed.
I hope that you get a reprieve from the craziness of this year & have much better health from here on.
Take care, Anna
I had no idea that "Bever Fever" was so easy to get in BC. I had always thought that you had to go to Mexico or something to pick up a bug like that! Guess not! No more recreational water for me... and I didn't even get fully in the water - only splashed around at the edges. I was eating finger foods though.... I guess without washing my hands first... bad me!
I'm even a little paranoid now about the local pool I swim at once a week. Giardia can live in Pool water (chlorine doesn't kill it).... I make every sure I don't get any water in my mouth now and always shower afterwards.
I've even started boiling my tap water (then the Britta) for my drinking water. I was reading the local BC CDC's web-site saying these parasites have been found in municiple water systems in Canada (usually well water) but that there aren't any testing procedures or acceptable/ not acceptable limits or guidelines set for Canadian drinking water for these types of parasites. Its feasible you could get if from your tap water... that freaked me out!
I also went and got my cat checked just in case because animals can carry it too. The test was expensive and took a week so I didn't have it run but got the precription for the car and treated him just in case.
I'm turning into a total germaphobe! LOL!
Feeling better this week. I've now started my Enbrel on a 5 day cycle instead of a 7 day. We'll see if that will finally gets me to true remission. 3-month experiment... not sure how the insurance coverage is gonna work yet - might cost me a little bit - but I think it will be worth it. Coming into the busy season (retail Christmas) at work and I need to be on-top of my health.
Wishing you (Canada) a happy belated thanksgiving and the rest a happy Halloween (I know its only the 13th - but I like this time of year).!