Ankylosing Spondilitis and High Blood Pressure :-(

[Pepa]

During my last pregnancy I was diagnosed with AS but due to preg and then breastfeeding wasn't able to use any meds. It got to the point that I couldn't stand the pain any more and stopped breast feeding so I could take the meds and I've now been diagnosed with sudden onset high blood pressure...so now I can't take the meds while they figure out what is causing it. So besides feeling like shit for putting my dd through the stress of forced weaning for nothing, I'm still in pain and feeling like I'm sitting under an unlucky cloud at the mo.

Is there anyone out there with AS - I don't know anyone in RL so I'm sick of explaining to friends and family what it is and that its not just a bad back...and has anyone heard of high blood pressure being linked to AS???

Don't have AS but have a couple of patients with it. AS can be associated with a number of other problems but can't think of a direct link with high BP.

What drugs were you on that you can't take now you have high BP?
One of my patients has had wonderful results with ETANERCEPT - for severe AS - when other things have ahd side-effects/not worked.

I haven't been on anything yet, at the beginning I could deal with it and then I wanted to breastfeed. The Doc said she would put me on Celebrex (sp?) but now with the investigation into the HP she won't do that until it is sorted.....

I know how it feels to want to breast feed depserately but you do have to consider how you feel physically. In reality breast feeding is ideal but compromises are made all through life and child-raising.

How high is your blood pressure?

this is interesting
my sister has as and had pre eclampis in pregnancy and her baby girl had to be delivered a month early.
i never thought the two could be linked

I have Ankylosing Spondylitis-mine has got less painful over the years, but I used to have a lot of pain when it was first diagnosed.

I used to have hydrotherapy when mine was very bad-do you think that would help?

I have not heard of any link with high blood pressure. (Although I also got pre-eclampsia in my first pregancy).

I get other related problems-uveitis and scleritis for instance. I am sure you know that AS is basically an auto-immune disorder which can be associated with various other such disorders.

Thanks for your replies everyone, sorry for the delay in replying, I'm actually and ex-pat living in Canada so the combo of time difference and normal RL 'drama' sometimes makes it hard to get back to the all important MN in a timely fashion !

WP - When it was discovered (I was at the doc's for a routine repeat perscription for the pill and she took my BP) it was 185/110...shocking for someone who has has no risk factors and has always had v. low bp even during pregnancy. The previous time it was checked was about 4 months before that so something definately changed. Now with the BP meds I'm down to 140/90, going in the right direction at least!

You are totally right about making compromises regarding child rearing, I know logically dd is just fine I was just having a bad day and feeling all at the situation in general!

Candy and Tiggiwinkle - its really 'great' (iykwim ) to hear from some other mums (& mums2b) with AS, sometimes I feel like it must be all in my head because no-one in my F&F have heard about it and I have to explain myself all the time. I think they just file it under "back back" and just figure I need to pop some paracetemol!

I'm going to look into hydrotherepy - I've had loads of conflicting advice from different doctors and physio's regarding non-medical options it sometimes hard to know where to start!

My husband has had AS for 50 years but never any problems with high blood pressure. He has been a lot better for the past 10 years in fact has hardly any problems of course the bottom of his spine is still rigid and he has to be careful with doing certain things. One side effect he had over the years was iritis had many trips to Moorefields Eye Hospital to sort it out. We have found that people have had it for quite a few years and the doctors just said it was a bad back. We were lucky that when my husband went to the doctor he diagnosed it straight away so could refer him to see a Consultant at Middlesex Hospital.

mowbraygirl - my AS, only came to light when I was diagnosed with iritis..apparently its a common way they find out about AS because the back symptoms are often ignored.

Pepa - can I ask how old you are? BP that high needs further investigation certainly if you are young.
Would advise - kidney bloodtests, kidney ultrasound, hormone blood tests and heart scan. Easy tests to arrange and perform.

Dear Pepa - I've been suffering from AS for the last 6 years and I understand how it feels to have a flare up, the pain is excruciating. I am just getting over a recent bout. It's strange you mentioning about high blood pressure, although I haven't got high blood pressure, I have been diagnosed with an Arrithymia (my heart pumps out extra beats), so as well as my AS meds I am now on Beta Blockers. Although it hasn't been linked I'm now beginning that there may well be. I would be interested to know. Also have any AS sufferers out there had inflammation in the big toe? I now have it in my big toe apparently....I felt great when I got to 40 but now feel like total shit

Sorry, me again - Pepa I know you have mentioned Celebrex, I tried that but it didn't work for me. I was then put on Arcoxia, which helped a great deal, however my body got used to it and I found the symptoms coming back along with nausea. The consultant that I'm under then put me on Sulfasalizine - these are now working fab. Don't know if you want to mention it to your doc.

WP - I'm 34. The whole BP thing is just so wierd being so high just out of the blue. The nephrologist (sp?) I've been referred to has had me do all the tests you mentioned plus 2 renal scans (2nd one is tomorrow. I see him on Wednesday to get all the results so I'm hoping he has good news for me although not sure what that would be ("Sorry Pepa we didn't find anything" - not really good and I really don't like the sound of the things they could find!!)

MMP - I've heard that Celebrex dosn't work for everyone. I'll be interested to see what the Rheumatologist perscribes when I next see her (mid-March) I'm definately going to ask about the other meds you mentioned. Have you had any luck with non-medicinal treatments? Physio, Exercise, Hydrotherepy etc?

Hi Pepa - I have actually joined a gym and I've been doing pilates. Pilates is really good as it strengthens your core muscles which in turn support the back, it also keeps the joints flexible. I have found this class really helpful. I have had physio and it helped me a little bit but not successfully treated. I've not tried hydrotherapy, but I would definitely give it a try if there were sessions near where I live. Also the other non treatment I have had which was really good was a "Mctimmoney Chiropractor". A general Chiropractor pushes and cracks bones (I didn't like that), however the McTimmoney treatment is really soft, gentle and really relaxing, the one where I live charges £35 for half an hour, expensive but I have found it helpful. Hope this helps .

Pepa-mine was diagnosed only when I started suffering from iritis too-my back problems had been misdiagnosed for years by various GPs.

mewmew-it is interesting that you have it in your toe-one of my big toes is quite painful sometimes (the joint at the base is swollen too). I though I was getting a bunion but maybe it is the AS...

My feet generally are painful actually, especially the heels.

Pilates sounds like a really good idea, I had tried just going to a gym and even though I explained the whole thing to the trainer person, the routine they gave me just seemed to aggravate my back - I was so sore. Kinda put me off any kind of exercise!

Tiggiwinkle - my feet get very tender around the heel area as well sometimes feels like I walking on a really spiky surface. Makes you wonder doesn't it?

Yes pepa-mine are very sore sometimes and it hurts to walk.

Do you get this as well mewmew? I am sure I vaguely remember reading that tender heels can be caused by AS...

You should look at kickas.org/ an excellent resource and help forum for AS. There is a private women only board that you can request entry to; a med section with full details and an alternative health section with lots of different stuff, there's also lots of knowledgeable people on there.

Thanks for that link eyeeye-it is a really informative site. And I see that the sore heels are due to AS!

Thanks for the link eyeye - I'm waiting for my registration e-mail, suddenly I'm not feeling quite so alone !!

oh good . That site can be a life-saver. Its personality is American in the main so expect lots of support and 'care' which can seem OTT but is totally meant.

There is much of interest in there from drugs to alt therapies and just chatting with people who understand. I would also recommend, if your family members are interested, that they have a look as it is for the wider family too.

It's a bugger of an illness you have my empathy and hugs

oh and orthotic inserts for your feet can help. Get a referral to a podiatrist and get them specially made.

Hi guys - I can honestly say I don't have any problem with my heels (thankfully), however the area around my big left toe and the base of joint is excruciating at the moment. Thanks for the link to the site, it is so informative and helpful, I think better than the other AS website - I will registering this evening. I also feel that I'm not alone anymore.

Tiggiwinkie is right, it is a bugger of an illness and Pepa you also have my empathy and hugs
xx

Sorry me again Tiggiwinkie - the problem with my big toe has been diagnosed with AS and my joint is swollen too. I am now on Sulfasalazine, Methotrexate and Idometacin and I still get a degree of pain!

Maybe the idometacin is not the right pain relief for you?

The other two are DMARDs so don't provide relief as such just modification of the disease progression.

No harm in asking for a review of the pain relief. There has been anecdotal evidence that medics may not take a woman's complaint of pain as seriously as a mans unfortunately. And only you can judge your pain levels.

I also developed AS during pregnancy, although it wasn't diagnosed until over 6 months post-natally when it got so bad I couldn't walk at all. DS is now 2.8yrs. I haven't had any problems with BP but like others have had a bout of iritis, although that was after diagnosis. I've tried various medication options and at the moment (due to TTC) am just on buprenorphine and periodic depo-medrone injections.

I too have felt at my best whilst having hydro-therapy. It was the most pain free I had felt since before DS. And I've been considerably better since then, although maybe I'm just in a good phase.

Someone else mentioned about working on your core stability. In my experience this is SO important with AS. If you can strengthen your lower abdominals and pelvic floor then it acts like a belt supporting your back - if you get used to holding those muscles in whilst lifting your baby etc then the difference is quite remarkable. Pilates can teach you these, or a good physio.

Also, having a baby/young toddler I found the hardest with the AS due to the constant lifting. I was really in a bad way and so received a lot of help in making adaptations around the home, but a lot of things were simple - change baby at waist height, teach them to climb up to you as soon as possible, sit before lifting them, having a cot where the side comes off, asking people to get the pushchair in/out the car etc...

I hope you get to the bottom of the BP soon and you start to see a way forward as it is very frustrating and bewildering soon after diagnosis.