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Women with unusual AS symptoms?
#279723 01/10/18 09:31 PM
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Drenha Offline OP
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Hi all. I'm a 31 year old woman, hla-b27 positive with a family history of AS.

About 8 months ago I started having pain, sometimes severe but more often moderate, in two joints in my left hand. They are visibly swollen. At first I thought it was an injury but after getting better and flaring back up a number of times, I finally saw a doctor. He diagnosed me with spondyloarthritis, most likely AS or psoriatic arthritis without the psoriasis.

I have intermittent hip pain and have had near constant upper back pain for a year and a half, but I also had major back and hip surgery as a teenager so it's hard to tell if my back pain is related to arthritis at all.

I know that AS typically starts in the low back but that it often presents differently in women. I'm wondering if there are any other women who have AS that started in small joints in their hands. If so, how did the disease progress for you?

NSAIDS did not fully take the inflammation away, so I just started sulfasalazine and an feeling pretty worried about how it might impact my immune system as I am a teacher. Anyone have any words of wisdom about that drug?

Re: Women with unusual AS symptoms?
Drenha #279751 01/12/18 04:42 PM
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Howdy! I'm not much ahead of you on this, but I thought I'd at least tell you that you aren't alone! I am 42. It was finger joints that really moved things forward for me. That said, I had been having episodes of severe back pain since my twenties, but always wrote them off to injury, and later degenerative disk disease (as did my doctor). It was right after one of these episodes (in my late 30s) that I suddenly started having problems with my fingers, toes, etc. out of the blue. At the time, it seemed like a separate thing to me. It felt different. It still feels different. It was a few years before I made it to a rheumatologist. She connected the back and small joints problems and found I was HLA-B27 positive. My tentative diagnosis is AS, but it is also possible I have (or also have) PA or RA. I find that over time I have stopped caring so much about what it is so I can focus on managing it.

I have been taking methotrexate for a little over a year, and Remicade for not quite that long. Methotrexate seems to do more for my fingers; Remicade for my back. I have not tried sulfasalazine. I will say that I was really worried about the immune effects of methotrexate and Remicade, but thus far I have had no issues at all (knock on wood).

I'm not far enough in to really comment on the course of the disease for me. Methotrexate has really helped the finger pain, though. I was so freaked out at first about losing normal use of my hands. I can say that for now, my hands are in better shape than they were a year ago. My back pain and stiffness are up and down.

Are you thinking about biologics?

Re: Women with unusual AS symptoms?
ThreeG #279765 01/13/18 11:00 PM
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Drenha Offline OP
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Thanks so much for responding! I haven't thought about starting biologics yet, as the rheumatologist said that sulfasalazine is usually effective for finger joints. Would there be any benefits to starting biologics before my symptoms get worse?

It's reassuring to hear that you haven't had any negative immune effects yet - fingers crossed the same goes for me!

Re: Women with unusual AS symptoms?
Drenha #279773 01/15/18 03:01 PM
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I started with low back pain, but many women start with peripheral pain first, and often get pain in the neck or upper back before the lower back.

I've never used sulfasalazine, so I can't address the effects to the immune system. I am on Humira and methotrexate, and I rarely get sick. When I do, I'll usually be sick a day or two longer than before Humira and methotrexate.

Yesterday I was watching the latest video on SAA's youtube channel, which was a lecture by Dr John Revielle, a noted AS researcher. He commented that people with the HLA-B27 antigen actually have more resistance to certain infections, such as HIV and the flu, and less resistance to others, like salmonella and malaria. Not directly related to your questions, but I found the increased resistance to flu interesting and encouraging.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Women with unusual AS symptoms?
Drenha #279774 01/15/18 03:43 PM
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The flu info is really interesting, Ginny. I had read that HLA-B27 was associated with a slower progression from HIV to AIDS, but the flu info is much more relevant. It makes sense that there would be some evolutionary advantage even as we are all living with the disadvantage!

Re: Women with unusual AS symptoms?
Drenha #279777 01/15/18 04:08 PM
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Dr Reveille said that there are certain Native American tribes that have a high incidence of HLA-B27 (maybe 50%), and the researchers speculate that there could have been a flu epidemic in the distant past that wiped out all the HLA-B27 negative tribe members.

He also commented that there are not many HLA-B27 people near the equator, which is of course where malaria is more present.

It's fascinating, and just shows how much we still have to learn about the human body.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Women with unusual AS symptoms?
SouthernMoss #279790 01/16/18 06:19 AM
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Drenha Offline OP
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That's super interesting! I was worried about the flu this season, so that's really good to hear.

I've been trying to figure out the cause of my upper back pain and I'm beginning to wonder if it could be related to AS after all. I've done a few rounds of physical therapy that didn't really help - it sometimes seemed to exacerbate the pain.

For women who feel upper back/neck pain with AS, is that because there inflammation is starting in the upper back versus low back?

Re: Women with unusual AS symptoms?
Drenha #279793 01/16/18 02:33 PM
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Originally Posted by Drenha

I've been trying to figure out the cause of my upper back pain and I'm beginning to wonder if it could be related to AS after all. I've done a few rounds of physical therapy that didn't really help - it sometimes seemed to exacerbate the pain.


It very well could be from your spondy. Does your PT know you have possible AS? You need to tell them that and also tell them the therapy is exacerbating symptoms. They probably need to alter your treatment plan.

Quote
For women who feel upper back/neck pain with AS, is that because there inflammation is starting in the upper back versus low back?


Yes, that's normally the case.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Women with unusual AS symptoms?
Drenha #279803 01/17/18 02:56 PM
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My pain started out in my left shoulder. I really didn't have much lower back pain until things began to worsen after menopause.


Age 61. AS dx'd at age 57
HLA-B27+,iritis/uveitis periodically since 1970, diabetic
Meds. naproxen and muscle relaxer(as needed)
Re: Women with unusual AS symptoms?
Drenha #279805 01/17/18 04:50 PM
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Drenha Offline OP
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My pain is mostly between my left shoulder and spine and is sometimes sensitive to touch. My physical therapist eventually gave up as we couldn't find a mechanical reason for my pain and the exercises weren't helping. Perhaps I should try a different PT.

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