Hello,

I have started with pain in the pelvic area during my pregnancy which continued after my baby bith, I was diagnosed with sacroiliitis. Then I had some degenerative changes in the lumbar spine and spondylotic changes in the neck, is this AS. The doctor didn't give me any medication till now as I am breastfeeding, but I am worried. I had uveitis twice, the opthamologist told me it might be herpes virus and not related to AS as my HLBA27 is neg. I really appreicate your help

Hello hind - welcome to KA.

Do NOT have to be HLA-B27 positive to have AS! One soooo wishes that doctors would get this information. Suggest you go to the following forum here: 'Highlights in Spondylitis Research'. ALL the current information on spondy is there. The facts of HLA-B27 were found a few years ago now and it is a real disgrace that so much emphasis is *still placed on positive v negative findings. As much as saying that 'women do not get AS'... Incorrect. Women 'do' get AND a person can still be B27 negative and HAVE AS. As many here will testify to (including myself - DDx and confirmed AS by three leading rheumies. And no, no uveitis!)

HLA-B27 is more prevalent with AS, and men 'tend' to get more than women - and to be more severely affected by. Which does not mean that many women are indeed very severely affected by - and can still be B27 negative.

You have a DDx of Uveitis - do not expect an ophthalmologist to be up to date on the HLA-B27 factors! - and problematic SI joints. Suggest that you get an MRI done - changes will only show up on X-Ray after much damage has taken place. What is needed is seeing the inflammatory factors. MRI Saggital STIR imaging with tau1 and tau2 fat supression. Again, read the Highlights section.

You need to be referred to a rheumatologist. Meantime, might want to look at the dietary forum and also the alternatives forum here on KA. Lot of good information there.

Don't get too chewed up on it all though. But do know that you need to be proactive in the handling of AS, and proactive in finding out everything you can about the condition. Remember, your body and your health. You are in charge of 'you'. 'Smile'.

Go well - Take care -

Molly C (Ex-pat Brit - France)
Keeping on Keeping on

WELCOME, hind:



The good news (there are more than just one old joke that begins this way...): It is NOT HERPES.

And although I HATE welcoming new members, You have ABSOLUTELY come to the right place and not just because You DO HAVE AS, but because we can also DO something about it!

So welcome to KickAS and now make Your disease into a minor inconvenience, instead of a career (You have much better and more important things to do!).

HEALTH,
John

if you don't have a good rheumatologist, that would be my first move.

sacroiliitis, L-spine and C-spine changes, and uveitis, that's an awfully strong connection.

i wish they wouldn't rely so heavily on the HLAB27 gene. if 90-95% of AS patients have it, then 5-10% don't. 5-10% is a pretty huge number.

and only 25% of people with undiff spondy have the gene. i often wonder how very different undiff spondy is from AS anyway. that was my dx. i have pretty much all the symptoms except for the uveitis. but you have that as well.

i'd be asking myself, how likely to have all these symptoms that could be explained by one disease be due to multiple things. not impossible, but highly improbable, IMHO.

Thanks alot for all of you, will try to seek a rheumatoglogist but I am breastfeeding do you think medication can wait?

As you are breast feeding then medications will no doubt have to wait - most meds pass across to the breast milk. (Wondrous to have a wee bairn. So, everything to protect).

Suggest that you see your doctor and consult as soon as possible with a recommended rheumatologist.

Go Well -

Hi hind. Welcome.

Are you seeing a Rheumatologist? Very few people on this message board are medically qualified to diagnose your symptoms. With that said, you certainly list some symptoms that could be due to AS or one of the other Spondyloarthropathies. You should be seeing a Rheumatologist.

A few things to think about:
Sacroiliitis is considered the hallmark symptom of Ankylosing Spondylitis. X-ray confirmed bilateral grade 2-4 or unilateral grade 3-4 Sacroiliitis is necessary to confirm a diagnosis of AS. Alternately, MRI imaging that shows active inflammation that is "highly suggestive of sacroiliitis" may be used for confirmation. It is important to note that sacroiliitis does not occur exclusively in AS. It can be due to other factors such as pregnancy, trauma, osteoarthritis, infection and other causes. Was your Sacroiliitis confirmed by x-ray or MRI, or was it diagnosed based on symptoms?

Uveitis is technically an inflammation of the middle layer of the eye. However, the term Uveitis is frequently used more loosely for any inflammation of the interior of the eye. Did your Ophthalmologist use the term Acute Anterior Uveitis/Iritis to describe the inflammation you experienced? Anterior Uveitis/Iritis is the specific form related to Spondyloarthropathy. http://slides.asas-group.org/app/preview/84/large.jpg There are other causes for Uveitis including, as your doctor said, herpes - as well as trauma, surgery, virus, bacterial infection, and systemic disease.

The term Spondylotic refers to degenerative arthritis or Osteoarthritis. The degenerative changes in your lumbar spine could also indicate osteoarthritis.

None of the symptoms you are experiencing are particularly pleasant when you should be enjoying your new baby. I hope your doctor can determine a cause and treatment plan for you soon.

**EDIT - I started this reply before you posted that you would seek out a Rheumatologist. Some medications can be taken while you are breastfeeding, others can not. A Rheumatologist is the best authority to help you determine what is best for both you and your baby.

Hello hind, welcome to KA!

Having 2 attacks of uveitis plus diagnosed sacroiliitis plus degenerative changes in lumbar and neck... I'm only surprised that you haven't been referred to a Rheumatologist yet.

Stormy - yours is an incredibly informative post, as always. I'd written more but then discarded it after discovering you'd posted and have covered everything so succinctly.

Glad to hear you are going to visit a rheumatologist, hind. Good luck with your appt.!
mig

was thinking the same thing, a rheumatologist will know which meds you can and can not take.

with that said, a number of things that may be taken that may be helpful:

fish oil, vitamin C, ginger and/or tumeric, probiotics (if yours has a GI component like mine and a lot of other spondys have). my rheumy and i are going the supplement route with methylpred when i flare. he's not opposed to the other meds, but he's also open to supplements and such as well. if you find an open minded rheumatologist, you could very well find something that is compatible with breast feeding.

thanks to all of you, I am sure joining the forum was the first step on the right way for me.

will keep you updated.