Is APS progressive?

Hello everyone - I joined this site quite a while ago,but have only just plucked up the courage to write something! So here goes...

I was diagnosed with APS fourteen years ago, after three miscarriages. Over the years I would say that my health has been pretty good - only occasional migraines and fatigue, also an underactive thyroid. However, over the last three years I have been having 'flare ups' far more frequently - sometimes lasting for weeks.

I just wondered whether anyone else felt that APS is progressive

18 Replies

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  • This is a difficult question to answer because I think this condition affects us all individually. It also depends very much if you have comorbidities which you already have or may go on to develop some more.

    So as you can see it can be a bit of a loaded gun, it will also depend on if you are on any anticoagulation and how well you respond to that. Autoimmune conditions are notoriously fickle and Im afraid what answer is good for one will not be good for another.

    Sorry if that does not answer you question very well but its the best I can do honestly at the moment.

    I would carry on doing what you are doing if your health is being maintained and not worry too much about it but have a healthily respect and regard for it at the same time. x

  • Yes, in agreement to what is said here, and do try not too worry too much if you possibly can, hopefully we can all help with any queries that come along for you in the future. Mary F x

  • Hello Ange: I have a bit of a theory I'm trying to correlate in my own life and wonder if it is true for others. Do you think in the last three years you have had more emotional blows than in previous years? Sometimes I wonder if the biggies like loss of a loved one, a severe accident, the loss of a good friend, a child in trouble. Some sort of profound sadness. Loss of a long time job. Parental loss. Sibling loss. Sometimes I wonder if the tremendous emotional blows we deal with in a normal life send we, with autoimmune disease, into a flare of sorts. The thing about autoimmune disease is that it is better than we are at hide and seek. It can hide for years, morph into another autoimmune disease and resurface for reasons we don't understand yet. Or worse, not resurface but lay dormant. Yet one can't call it a cured because we don't have any idea why it stays dormant or what took place to keep it that way. I just wonder how much emotional energy and daily stress have an effect on flares.

    Is your APS managed on aspirin?

    Warm wishes,

    Canary

  • Hi Canary,

    Many thanks for your response; thankfully no more stress or emotional blows than in previous years. However after reading many of the posts on this site, I do feel incredibly lucky to have had many symptom free years - I just find it soooo bizarre that one week I can feel 100% - walking or riding my bike every day, the following week I can barely climb two flights of stairs without feeling totally fatigued and with joint and muscle pain!. I currently just take aspirin, although the rheumatologist did suggest plaquenil if the 'flare ups' became too frequent.

  • I feel the same. This week had a few "normal" days where I walked a lot, felt like my pre APS self and really enjoyed those days. The past two days I can barely move and feel tired just taking a short walk. I've only been diagnosed since March and it's hard to get used to. I'm trying to accept my condition but sometimes it's hard. I used to have my grandchildren over for up to a week and now I just can't do it anymore. I never know when I'm going to need to "just rest." I'm 67 and always had a lot of energy, did a lot of exercise and now if overdo it at all, I'm exhausted the next few days. I remain grateful for the good day.

  • I am 70 Loretta and you have to get use to that you can not do things like before. It is also aging. I have also grandchildren but my daughter knows that I can not coupe with too much.

    But exercise lucky enough, i can handle without beeing tired. I am a bit trained to walk 1 hour as i do it almost every day. I feel much better afterwards! Good for weight, bloodpressure, INR (I Think) yes for my whole APS-body.

    Best wishes with the APS-life from Kerstin

  • Hi Kerstin. I also walk usually at least an hour a day. I also live in an apartment in the NYC on a 5th floor walkup (no elevator) so sometimes I only go up and down once , but often two or three times (sometimes carrying groceries--and other thngs). Yes--I am getting older but not having the kids stay over is a disappointment but I visit them a lot.

  • Hi Loretta, I hear you are an active woman!!.

    We are not actually old but we can notice it when we sit on the floor and try to rize and stand up. Then I notice my body is not like earlier. But I will have a try with the stairs now. I live at 7th floor (have elevator) go off at 2nd floor and walk 5 stairs up. Not when I carry something though.

    Have a nice weekend!

    Kerstin

  • Great. I complain about the stairs but really, I think they strengthen my legs.

  • Canary, stress does effect the Hughes and it does vary apps said its such a fickle illness not even the specialist agree on this question. So we can only look at the evidence we have

  • My personal experience is in line with Canary's stress trigger observations. But the disease is SO fickle. Sometimes I go through a stressful period and there is no worsening of my symptoms. I know the mind body connection is real, and profound, but we have no objective hill top to climb and look back on all the mind/body hormone interactions to make suggestions and correlations. I have one well meaning friend who urges me to go deeply into yoga as she is pretty sure that will improve my health. Except with my progressing joint issues I can not hold most of the poses. I try meditation, but is that helping? I have no idea.

    Someday. . . Someday. We'll all know more and docs will be better able to connect dots in this or that person based on specific DNA profiles. Until then, we rely heavily on sites such as this one to look for symptoms and coping strategies that ring those internal bells." Oh! That sounds like what I have! Maybe that remedy would work for me!".

    Not an ideal situation. Welcome to life with a disease which was only first described 30 some years ago, ( which is a cousin of a disease which, at least here in the States, was often dismissed as a psychosomatic hysteria as recently as 40 years ago.)

  • The disease * often gets worse with the beginnings of menopause...around the time women start to get the fluxuations in their hormones. This is 'classic'. Teen years can be bad too....again those hormones! This is not abnormal and can make life "-ell" . I hope you can find a Good Doctor who understands this...it really helps! If you need to talk just email me!

    Lisa

  • Lisa it is good to see someone write that the onset of menopause can make things worse. I am 50 and feel like I am crumbling right now. I have mudded on for quite a few years, never well like many of my friends are it better than I am now. I am in so much pain with muscles and joints. And memory issues are crazy. I used to have a good memory. Trouble is I don't have a clue where to turn as I am sure there is nothing anybody can do.

  • Hi Lisa,

    Thanks for the response. At 47 the menopause is ever looming - something else to look forward to!!!

  • I agree with the STRESSORS theory...I listen to my body....and if I feel tired I rest.....but I go further and try to minimize any activity that could "kick start" my immune system....I have never suffered from allergies....but if I am feeling energetic and do a lot of 'yard work', I take take a Benadryl or other antihistamine....works so far.......I too have flare ups...but instead of having them frequently they are down to every few months..............

  • ange,

    You've received some great replies. My experience is that, yes, APS can definitely cause flares. It feels not so much like my disease is progressing as that I'm on an "APS-merry-go-round. My flares were far worse in menopause and better now that I'm beyond that. I also found that taking vitamin D supplements greatly reduced my flares and improved my health. Several recent studies and found that autoimmune immune patients tend toward vitamin D deficiency.

    One trigger for me is doing too much. Too much travel, for example, or too many deadlines, and not getting enough rest.

    I have several techniques for managing flares. Lots of rest, drinking plenty of liquids (I also spike my water with electrolyte powder recommended by my doctor), and eating foods that reduce (rather than promote) inflammation. Here are more yips for controlling inflammation: bit.ly/JYpCpC. And here's a link to more information about best and worst foods to control inflammation here: bit.ly/WQO4yY.

    Hope this helps.

  • Thank you ASigmon for your very informative response. I have an appt with the rheumatologist in November, so will ask him to check if I am deficient in vitamin D.I will also have to look at changing my diet, although cutting out the potatoes will be difficult!!!

  • Good luck and let us know what you find.

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