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#460807 - 01/20/12 07:09 AM confused
flea Offline
New_Member

Registered: 12/30/11
Posts: 3
Loc: Cheshire
Hi all smile
I wanted to talk about my own case as I find it all rather confusing and thought you might be able to advise:

I am currently under the care of Dr X: Consultant Rheumatologist here on Wirral, North West England and think he is brilliant, in part, because he is the first 'ologist' I have seen to date who 1)listens to the patient and 2) doesn't dismiss me as neurotic.

Pre 2009 my only diagnosis was Coeliac disease (1970)and this is extremely well managed - Although when my immune system 'flared up' it was suggested that I perhaps wasn't managing my condition!! Lets be honest, one would have to be seriously crazy to encourage jet propelled diarrhoea from cheating. I was amused though that a Dr who could clearly see I am in my 40s would ask.

2009-A couple of events happened and I'm unsure whether they play a role in my current condition: I had a really bad stomach bug, the pain (mainly right sided) was so severe I fainted. I made a full recovery with no medical intervention. The other wierd thing that happened, occurred 6 months later while at the hairdressers. I experienced a severe allergic reaction to hair lightener/bleach and experienced itching red palms, sweating, and a rash that crept down my body from head to knees. This was followed by intense itching and an urgent need to go to the loo. After which I felt a huge adrenalin rush that left me feeling jittery for days? I have since developed multiple allergies to different things, tramadol, codeine etc

Exactly a week after the hair incident I was driving the car when I got a severe pain in my right eye, which began to water and was pink and photosensitive. An appointment at the eye hospital told me I had uveitis, which I had never heard of - but was told to use cyclopentolate drops twice a day and prenisolone drops every two hours...The uveitis was very stubborn and since then I have had 5 flare ups of uveitis and discovered that I am HLA B27 positive. Just before my first flare up of uveitis the pain on my lower right side returned and I had noticed that whenever I opened my bowels I was passing blood streaked yellow mucus that was offensive smelling, this was followed joint pain on the right side of my body (knee and ankle and lower back pain that woke me up. I also have eczma in unusual places (ears and groin)

I have noticed a pattern and that is: A few days before Uveitis flares up I start to notice mucus when passing stools and on the tissue - after the uveitis flares so do my joints, mainly on the right side of my body - but during last flare in the soles of my feet ached as did my achilles.

The gastroenterologist did a colonoscopy and a gastroscopy and took 18 biopsies (to rule out crohns)and discovered 'patches of granular mucosa with loss of vascular patternation in sigmoid colon' although no evidence of anything serious, like crohns etc. The gastroscopy found nothing but did confirm my coeliac disease is indeed well managed.

The other interesting thing that lulled me into a false sense of 'I'm healed' was a 10 month gap between my last flare up and this one!

After each flare up I am left feeling exhausted to the point of feeling that I haven't been to bed at night and this can last months...

I have been under five different ologists since this began and find the experience highly frustrating as each specialist only appears to look at the part of your body that they specialise in shocked ... So gastroenterologist looked at the mucus problem, opthamology eyes and so on...Yet none of them looked at me holistically..which was astounding given that there appeared to be a link to my immune system. Did anybody experience this?

Out of sheer frustration I abandoned specialists all together and looked at homeopathy instead - That is, until my latest flare up when I went back to see Mr X. He listened to everything I said and didn't look at me as though I were imagining my symptoms, he then examined me, took blood and ordered x-rays, before giving me an IM injection of 120mg Methyl Prednisolone, which he claimed would help.. Yes indeed it did (miracle drug) and aside from the munchies - very effective as its cured Uveitis and most joint pain..

The x-rays of my sacroilliac joints show no arthritis which is puzzling and Dr X's diagnosis leans towards seronegative arthritis/arthopathy? I was given a leaflet on Methotrexate and advised to read it with a view to commencing it in February at my next appointment..

Does the above sound like a normal path of AS or seronegative arthritis and does anybody else take methotrexate?

Sorry to have rambled on but I'm intrigued to know whether my experience is the norm










Edited by mig (01/20/12 08:55 AM)
Edit Reason: to remove doctor's name

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#460815 - 01/20/12 11:30 AM Re: confused [Re: flea]
Pea Offline
Lieutenant_AS_Kicker

Registered: 02/24/11
Posts: 1821
Loc: Pacific Northwest
Hi Flea,
You have come to the right place and welcome, welcome, welcome. We will try to help you as much as we can. We have all had Dr.s problems as well. You will need a team and it look's like you are trying to pull that together. Yes, you are in the norm. Sounds classic to me.

They never mentioned to you that you might have Ulcerative Colitis? That is how mine started. All of that mucous. Then the diarrhea with pain eventually came and a year later the A.S. I was on Sulphasalazine for 4 years and went into remission.

I am a retired hairdresser. You had an allergic reaction to the dye and or bleach. Insist they do a swatch test if you try again. You may need to go with a semi-permanent color that doesn't have the same stuff in it. It won't cover any gray though. You should have gone to the E.R. That is very serious!!!!!!

My husband has Celiac as well. He has become very sensitive to steamed vegetable as time has gone by. He has to take Beano before he eat's them or he will have diarrhea. Canned veggies, no problem. He still has a lot of diarrhea though regardless. His Celiac is well managed as well but Doc's say this can still happen. The eczema is also a part of Celiac but becomes worst in cold weather. We have seen this pattern with my husband and his mother, also Celiac.

The Medrol pak's of Prednisone really help through flares and always good to have on hand. Can't take them all the time though. Has your Rheumatologist put you on anything? I am on MTX but also have Remicade (TNF blocker) infusion's and Sulphasalazine. I have an eye Dr. who specializes in Uvetis and has quite the protocol for that.

I have a Naturepathic Dr. as my primary and she is one smart cookie! All of my Dr.s report to her and she was an M.D. before she became and Integrative Dr. She look's at all the other thing's the other specialist don't. She is wonderful. I even have her cell phone number to call her direct.

If you feel you are not getting the care you deserve, keep searching for the right Dr.s. Be very patient though. A.S. is one that takes a very long time to diagnose. Look into going on the No Starch Diet. There are other's on here who swear by it. I am on it as well but it hasn't helped me as much as the other's. At least your eye Dr. is on it. Best of luck. Keep on here and learn all that you can. Research is your best opportunity to keep up and have your question's all lined up before you see your Dr. God Bless.
_________________________
Pea
Diagnosed with A.S. 26 year's ago.
Diagnosed with Fibro 9 year's ago.
Sulphasalazine, Folic Acid, Remicade

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#460832 - 01/20/12 04:14 PM Re: confused [Re: flea]
avonldy Offline
Major_AS_Kicker

Registered: 02/26/10
Posts: 2190
Loc: N. Sacramento Valley
You might ask your Rheumy about taking Humira because of the Uveitis. If you keep getting flares of Uveitis, the damage can cause a loss of eyesight. MTX might help with the joint pain, and you might have to go through some hoops and try some different meds before being approved for a TNF blocker, but keep asking.
_________________________
Donna
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,

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#460892 - 01/21/12 01:28 PM Re: confused [Re: flea]
rumble Offline
Supreme_AS_Kicker

Registered: 01/31/09
Posts: 4146
Loc: NE Oklahoma
Welcome! It sounds like you probably have AS, but I'm not a doctor, no do I play one on TV. laugh My doc says 'inflammatory arthritis' right now, but treatments are largely the same, so I'm not too upset.

I can't speak to the bowel issues, the uveitis or the allergies, but I CAN tell you about MTX.

After flunking a number of RX NSAIDs, I was put on sulfasalazine, which didn't work either. Then I was started on MTX 15mg/week. After 2-3 months, as I recall, it kicked in and relieved about half my suffering. I don't have any side-effects, but I wasn't satisfied because I'm still working and struggle a lot of the time. Asked to raise the dose, so he pushed me to 20mg/week. I gave that dose a 4-month trial, but it didn't give me any additional relief and I had started losing hair. Being a female (with a thick head of long hair), this was not acceptable. So I went back to 15mg/week.

You will get varying stories here on MTX. Everyone is different and respond to meds differently. Personally, I am glad for MTX. While it doesn't relieve ALL my symptoms, it IS beneficial. I take it at night because rheumy said it can make you feel tired after you take it. On the first dose, I had a very slight amount of queasiness, even though I took it with a few crackers (and still do occasionally). This could also have been because I was laying in bed wondering if I would feel any side-effects. tongue4 For the first month or so, I felt tired for about 18 hrs, but wasn't bedridden...just tired. I knew it wore off at 18 hrs because I was usually at work on Saturday evening (2nd shift) and repeatedly felt "better" about 6pm...more energy without having had food or drink.

Now, 2 yrs later, other than a bit of fatigue after the dose, I have no side-effects. I was off of it for 3 months last summer because of an abscess on my cheek and that put me into a huge flare up of symptoms. I definitely respond well to it.

Good luck on finding the treatment that works for you. All these drugs take 3-4 months just to see if it works....it seems to take forever to find the right one if you aren't lucky enough to hit it on the first try. I had the first visit with my rheumy 3 yrs ago and it's just now that I'm thinking we have a treatment plan that works.

Sorry this is so long.
_________________________
DX: psoriatic arthritis, osteoporosis, psoriasis
Meds: MTX since Oct 2009, 15mg/week. Started Cimzia 12/31/13
Epidural steroid injections x4; Lumbar radiofreq ablation
SIJ steroid injection and bilateral radiofreq ablation x5!

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#460906 - 01/21/12 03:32 PM Re: confused [Re: flea]
cemc Offline
Captain_AS_Kicker

Registered: 01/25/10
Posts: 1908
Loc: UK
If MTX is being talked about as a treatment, then you are indeed being taken seriously. That doctor sounds like a keeper. If you haven't got anything showing on SI xrays, then it can't be AS, but it could be any one of the other spondy's (seronegative arthritis) or it could be early AS. As long as it is recognised as a spondy disorder then they can treat it, and it sounds like that is the plan.

I don't think we get Medrol dosepaks in the UK - what they tend to use here for short course steroids is either the IM injection(which seems preferred by rheumies), or a burst of 5-10 days of prednisolone (a common GP response. Steroids aren't a good long term solution at all, but for a short break to knock a flare, or as a test to see if it is indeed inflammation, they are wonderful.

Ask your doc more questions next time you see him. In particular would be well worth knowing what they think the gut stuff actually is if not crohn's, and what the working diagnosis for the arthritic stuff is. With coeliac disease already I guess you have already realised that these autoimmune disorders often don't come one at a time, but you can easily start a collection. Hope you get some good treatment that really works. Wish we had your rheumy up here! I could do with someone who really listened and put stuff together.

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#460924 - 01/21/12 07:52 PM Re: confused [Re: flea]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5433
Loc: So Cal (high chaparral)
WELCOME, flea:

Quote:
Does the above sound like a normal path of AS or seronegative arthritis and does anybody else take methotrexate?


There is no real "normal" path or progression for AS.

I have taken MTX with mixed results, but like the steroids it does nothing at all to address the cause of AS.

Carol Sinclair's book is readily available there, and has the mechanism of AS well explained by Ebringer, a prominent immunologist training instructors of the rheumatology discipline in London. Her book is "The New IBS Low Starch Diet."

After getting iritis regularly for about 10 years my eyesight has been compromised and I have not had this aspect of AS in over 10 years now.

Good Luck to You,
John
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#460950 - 01/22/12 09:07 AM Re: confused [Re: flea]
flea Offline
New_Member

Registered: 12/30/11
Posts: 3
Loc: Cheshire
Thanks so much for the wonderful welcome and great response to my initial post :-) I feel more optimistic now about taking methatrexate, I'm always very reluctant to take any medication but after this last flare up, felt desperate. The steroid injection made a huge difference in how I felt, in fact I haven't felt so good in 18 months.. It was lovely to feel back to normal once again as I'd forgotten what normal is!

Thanks again

Joanne

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#460953 - 01/22/12 10:28 AM Re: confused [Re: flea]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 20254
Loc: Upstate NY
my rheumy thinks my really horrible flares, which always seem to hit in the middle to end of the summer (early july through mid august start), may be due to allergies. though he doesn't think an allergist will be open minded enough to treat my allergies to help my flares, i'm still going to make an appointment with an allergist and see what happens. hoping i guess for allergy shots. though my allergies don't seem as obvious as yours, i do think they are a piece of my puzzle.

for me it took 13 years and 5 rheumatologists to get to a dx. my symptoms were / are a bit different than yours, but the frustrations to a dx sound familiar.

i agree with you, you need a doctor that sees the GI issues, uveitis, and joint issues as one. so what if one test doesn't come back "positive" or "conclusive", gotta look at the whole picture.

the rheumy that finally dx'ed me, dx'ed me with undiff spondy. i had to travel to find him. but then with that letter, FINALLY got in to see dr P, who i see now. he too talks to me about spondy. says he believes all spondys start in the gut. my gastritis and IBS started 5-6 years before the arthritis symptoms. and while he talks undiff spondy, he keeps marking down the code for inflammatory arthritis that falls under the same first numbers as RA. when i asked him about that last visit, he said, yeh, spondy, but still wrote the same code. so i don't know. but he's treating me, and i'm much better between flares, so i don't care. we were going to start sulfasalazine but then my liver enzymes were elevated. if they keep coming down, we'll probably try the SSZ, if not, it will probably be biologics. he doesn't think MTX is the right drug for spondy.

i'm surprised that with your GI symptoms, uveitis, and joint issues that this rheumy doesn't see spondy. but glad that she/he is listening and treating you. i guess see how the MTX does, but if you can't tolerate the side effects or it doesn't help, ask for something else. that's what i would do.

i've never had uveitis, only dry eyes / blepharitis. usually the uveitis is a quick way to a dx and treatment. sorry its taken you so long and been so round about to get where you are today.
_________________________


sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. fish oil. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs

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