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Date: 18.06.2010
From: Juliep

Subject: newly diagnosed and new to forum

Hi
I have just been diagnosed with seronegative inflammatory arthritis. my feet, back and right hip are mostly affected and i have plantar fasciitis in both feet as well. 5 weeks ago I had a steroid injection and started on sulfasalzine. the steroids helped quite a bit at first but this week a lot of my pains have returned. i also had a lot of nausea and headaches with the sulfasalazine but these seems to have settled a bit thank goodness. I am finding it a bit hard to deal with the diagnosis at the moment-it is good to have a cause for the pains however. I am a doctor and am also finding it hard to be a patient!! and all the medicalisation the condition brings with it. even though i am a doctor there seems to be little information about seronegative arthritis out there. also i struggle to deal with the reaction of friends (mainly the medical ones) who dont seem terribly concerned about my diagnosis. I realise there are many other terrible illnesses i could have and feel gratful i dont have a terminal illness, but this arthritis is likely to be chronic and be with me a long time-as well as maybe affect my life. it would be good to feel as though people are concerned about me (hope that doesnt sound too selfish)any way i have found the messages on this forum helpful as you all understand what having arthritis means and how it can affect you. meanwhile i carry on and hope the sulfasalazine starts to help in the next few weeks!
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Date: 18.06.2010
From: Sally

Subject: Re: newly diagnosed and new to forum

hi Julie, I've got the same diagnosis as you and struggled (and probably still am) with coming to terms with it. I was diagnosed last November but got ill during the summer. Some of my friends and family don't seem to realise what an impact this is having on my life. Just because you're a doctor doesn't make it any easier! Your colleagues probably only see people in surgery and don't necessarily fully appreciate the day to day difficulties you suffer. I am having a spat with my housing association at the moment as they want to change a lock on my gate. OT have specified a fob key that doesn't need turning but the 'disabilities officer' is insisting on giving me a key that needs turning. He doesn't seem to understand that when I have a flare up I simply can't do it. That lack of understanding seems common even amongst people who should know better.


I'm taking Methotrexate 7.5mg. I need to up it as am still getting a lot of pain but have dodgy liver results so am waiting for my appointment with hepatologist in July before I do. I found it very confusing at first to differentiate between RA and seronegative IA. It has become much clearer from talking to people on here rather than talking to the professionals! My GP is great and has given me loads of time and support but she doesn't know all the answers either!
take care.
xx
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Date: 18.06.2010
From: Sally

Subject: Re: newly diagnosed and new to forum

Just wanted to say that my views on sero- IA are that it is basically very similar to RA but without the RF in blood. Some people say it is milder and others say there isn't much difference. Some people say the progression of the disease is not as severe but Jill, who posts on here regularly, would probably disagree.
I suppose you might test positive for RF at some stage. As far as I am aware the treatment is identical, which is all I need to know right now.
Someone I know claims she has cured herself by a wheat free diet plus a few other tweaks to it. I've read that even if you are symptomless when on a diet you can still get damage to your joints if you don't take DMards or anti tnf's. Do you know if that is the case?
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Date: 20.06.2010
From: Jill

Subject: Re: newly diagnosed and new to forum

im in huge flare up at mo.....saw my Bio Nurse, said inflam and r.a. ia same...R.A. is inflamation....Im seron neg like sally(Hi Sally X) I was also told that I tested positive for Ana 1 (test)? didnt ask what that meant, seems its a marker for having R.A. but I show neg, even in huge flare up, which im having at mo.....My Bio Nurse said, I.A. and R.A. are same, with slight variances.......my pain is in every joint, tendon, feet, every digit is trigger finger and thumb, spine, hips, and all that rotten synovial fluid is always inflamed! so nitemare!...have herniated disc in neck....seems I never seem to settle donw with this insidious disease, somehting else always comes along to make my life harder!....sally ya right, I dont think I have accepted this disease well, altho I try, and I also appreciate that others are far worse off than me with terminal illnesses, but at end of the day, we live with what is infact happeneing to us, I can barely use this computer due to pain, makes me feel sick!..... anyway, will stop whinging now.....plus have to get offf this.....btw gang, gall bladder issues obviously fine now, but apparently have Gastritis for life!!! lovely! so on bland food still...or I suffer bad!....will be back another day, but need to get off this now, cant be on it long due to neck....take care all xxxx
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Date: 21.06.2010
From: Abbie

Subject: Re: newly diagnosed and new to forum

Hi there Julie! I am so sorry for your recent diagnosis but am glad you have found us. I'm 33 have had PA for about 5yrs but Only diagnosed last August. I have 15mg Methotrexate injections once a week. These were due to go up to 20mg recently but that plan was pulled due to recurrant mouth sores ugh! I often have depot medro injections but these are now much less effective. I've just come off pred and am really feeling it. I'm waiting to here If I can start Infliximab/Remicade but Rheumy has to consult with my neuro first. I have found the diagnosis hard to deal with also. Some days it really hits me that this is for life and it really gets me down. Also sometimes when I actually say the word Arthritis I say it in dis belief as If 'realy? Me?'. I'm glad you've found us though and hope you find everyone as much of a support and comfort as I have. Go well XXX
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Date: 05.07.2010
From: Julie

Subject: Re: newly diagnosed and new to forum

thanks for the comments so far. not had a chance to look at this site for a couple of weeks as very busy. father-in-law died very suddenly 2 weeks ago so all family in state of shock. also my youngest daughter has a possible fractured wrist which has meant 3 trips to hopsital so far. not easy to deal with the stress when it comes at you from all angles is it.
i still find peoples response a little hard to deal with. they either look as me as if i am making it up ( i guess i dont look ill, and as i have no choice but to keep going i am still working and doing the school runs etc) or they make comments like" well we are non of us getting any younger"
my family are supportive but hubby works full time and the girls do their best-but at 16,13 and 10 can only do so much. think the steroids are wearing off as am getting more pain and stiffness. and sulfasalazine doesnt seem to have kicked in yet-has been nearly 8 weeks. had to have extra blood test last week as my white cells dropped.
still will keep battling on-am looking at trying to change my diet-more oily fish and olive oil and less processed food. doesnt seem too extreme and sounds healthy enough
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Date: 17.07.2010
From: Jill

Subject: Re: newly diagnosed and new to forum

Julie, I have same probs. school runs etc...I get the same comments.."oh well we r all gettting older".....this is premature ageing, as far as best I can describe it....they dont know, and cant possibly know what we r suffering...and again, welook a picture of health.......sulpha made me ill, now on Enbrel, and MTX....helps, but ive still got flare ups coming......also have Gastritis, and Pernicious Anemia...so im angry at mo......one thing aftet another....it never stops....had lots of corective surgery too....shoulders, hips, knees, spine, due fusion, but not sure il take that option.....mite let is fuse naturally....ive jsut had a 2 week course of B12 injections....now a week since last jab, and begining to feel weak again, so so tired!.....anyway./...great forum....u will get support here and maybe some answers, gopod or bad....tc Jill
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