When one of my docs suggested adding a topical progesterone cream to help me through perimenopause, I agreed, gave it a whirl, and learned to love that cream! I had more energy, my mood stabilized and the frequency and severity of the a fibs which run in my Father's family was reduced.
But after a year or so the doc, on the basis of a saliva/hormone analysis/ moved me to a pill form of bioidentical hormones which included DHEA, estriol and estradiol. I did not feel as well. When I shared this with him he insisted that this new formulation was what I should be on.
Time passed. Menopause came. 2.5 years ago. But this doc wanted me to stay on the hormones. In fact, the sputum tests continued and the formulation was tweaked every now and again. Then, at my last appt, I (AGAIN!) suggested that I come off the hormones. "I do have autoimmune issues as you know, and though I know that bioidentical homones are much better then the commercial ones, still . . . I think I'd be better off getting off them."
The doc disagreed, suggested I read some book by Donna Summers, and wrote a new script for another formulation. He wants me to stay on them for life.
I went rogue. At first I skipped a dose every 3 days (for 3 weeks,) then every 2 days (2 weeks,) etc through every other day, then a dose every 3rd day. I intended to continue downward until I got to a dose every 4 days before I quit altogether, but . . . I noticed something.
Consistently (let me repeat that) CONSISTENTLY I noted that on the days following my evening BHRT pill my hip was much more inflamed and painful. And those days which fell a good 2 days after I had taken my last pill were much better -- less pain, more walking and less napping. After I confirmed this observation it was hard for me to continue with my slow draw down. I just stopped taking them.
That was 2 weeks ago. Since then I have cut my NSAID intake by 1/3, my pain has decreased and I am able to do more. Much more. I even over-did one day and, entranced by the call of the wild, hiked up and down a hill with an 800' elevation change over just .75 miles with no ill effects. (Repeat: NO ILL EFFECTS!)( Context for you Brits: like hiking up and down half the Devil's Staircase on the West Highland Way) (except this hill was part pasture -- so there were cows and lots of mud.)
So . . . I was right all along! It was inflammation which began 4 years ago (close to the time I started the BHRT pills) that was eating away at my hip joint. The osteoarthritis I now have will always be with me. But now that I've got the inflammation under control I can start to build up the surrounding muscles to see how much l can now get out of this joint.
Don't get me wrong. Taking the bioidentical hormones to get me through perimenopause was a good idea! The heart flutters had become alarming before I started on the pills.
But once through menopause I should have stopped (and I'm glad I finally did.) I don't care if my face is going to look more lined and aged, (an argument the doc pointed out.) I look into a mirror maybe 3 - 5 times a day. I put weight on my left hip several thousand times a day! And as far as the osteopenia in that same left hip? Well, I believe that more walking and exercise due to less inflammation will be more helpful then the benefits of that bone building estrogen. After all, if the estrogens were going to save me from bone loss, then how come that one spot -- other tested bones were nice and strong -- became less dense while I was on the hormones? Huh?
I'd love to fly over to Scotland and hike the Way again. Maybe I can in a year or two?
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GinaD
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What an amasing story and a lesson for all of us not to 'keep taking the pills' if we feel they are making us ill.
I'm seriously wondering about the Ramipril I take for my blood pressure. Sure, they have lowered my bp a treat but I now have tight calf muscles that hurt when I walk up hills and when I go cycling' I used to race in 100 mile bike races. Also, I'm now getting a dry. tickly cough that is affecting my choir singing too; a listed side effect of Ramipril!
So, I'm going to have a chat with my GP about this.
Good luck with you meds issue. I also sing in a choir, and today I noted that contrary to established knowledge about voice and hormones, I was more gracefully hitting those high Es.
We had quite the curve thrown our way in service today. ( mine is a church choir.) One of our congregants, Bob, collapsed during the sermon! An ambulance was summoned. A nurse in the congregation rushed to offer first aid, other congregants tred to calm Bob's wife, and our priest lead us all in supportive prayer. The ambulance arrived, Bob was taken out, someone went with Bob's wife, and we all sighed and tried to refocus on the service. But Chuck was still so un-nerved by it all that he broke one of the vesels -fortunately it was the one with water and not the wine.
So much for calling it just another low Sunday in Epiphany!
I sing in a choir that is part of the Royal School of Curch Music and we sing in various cathedrals and Abbeys deputising for the main choirs at these places, when they are on leave. I also conduct a choir that sings services in various churches and also holds concerts too.
Wow! Doubtless your choir chops exceed mine. Maybe if I make that wished for trip back to the UK I can hear one of your choirs.
A bike question, ( if you don't mind.). I'm going to have to sell my Gary Fisher Tuberon hybrid. The OA is not going to go away and I just can't get my leg over that cross bar. I'm looking at the Trek Verve 3, which is WSD design with a very low cross bar. My local dealer suggested I consider a "feet forward" style. I rejected his idea as the feet forward stance sounds pretty unstable.
But then again, my mountain biking days are over. From here on in it will only be pavement and rail trails. Do you have any input regarding these feet forward styles? I do live in a semi mountainous state and I shift down to 1 ,1 to make that little 1/8 mile climb up the hill to my house. Currently, I must keep the RPMs high in order for the cycling to build muscle and lubricate the joint without spiking the pain and inflammation. I would be greatful for any 2 cents, ( or 2 pence,) you might have on the matter.
Thanks for your very interesting story. We are all so different. I first became ill 22 years ago with CFIDS (Chronic Fatigue Immune Dysfunction). It was serious, not just fatigue, auto-immune issues along with my adrenal gland just stopping, to name but a little. Didn't know about APS then. Anyway, my periods just stopped, as did all hair growth on my legs, under my arms. My great doctor put me on bio-identical estrodiol and progesterone and told me the progesterone would have to be life long.
After a year my periods started again and leg, etc., hair started growing. without that B.I. cream I don't know what would have happened, I thank him so much! After 10 years I tried to stop it, under the care of another doctor. Immediately I started having many side effects and, after a number of months, the doctor put me back on the cream. She concurred that my first doctor was correct and while I no longer take any estrogens I do take the progesterone, albeit a smaller dose. I understand that women can, and do, take these B.I. well into their late 60's and all the tests done have been done with synthetics, not the B.I. hormones.
However, that doesn't address your situation. I'm adding my 2 cents only to show how we are each different. I also need to take low dose cortisone as my adrenals are truly exhausted and there may be some connection. They continue to learn. Without the BI hormones, I'm the opposite of you, I just can't function!
I'm glad you learned what was ailing you and I'm glad I've got help for me.
I'm glad you got to the bottom of this and came off the treatment! I have yet to hit the menopause although I'm sure it's not far away, I doubt i'le be able to take anything as have had severe reactions to hormone therapies in the past.
Sometimes it just goes to prove we know our bodies best!
I admire your energy and fighting spirit! Something us Hughies have in bucket loads!!
Love n gentle hugs Sheena xxxxx
Yes. Everyone is different..
A friend of mine is also autoimmune and had cancer in her mid-50s; she looks like she's still in her 30s. She does not take ANY hormones for her post-menopause. She didn't lose her hair at all whilst in Chemo. She works full-time with two teenage boys and looks fantastic...
I'm another one who just couldn't function without biodentical HRT. In fact I'd kill anyone who tried to get me off them. And occasionally they do, gently, pointing out the risks in association with APS. Sorry - I don't care! Quality of life now means more to me than the potential risks for later. And my bones are already heading for the knackers' yard so I need some oestrogen to slow the rot.
Thank you all for the feed back. Yes we are all different and we all hope for the day when those differences can be identified in the lab and not through trial and error involving stubborn docs and inconclusive patient feed back.
I am better. Raising my INR a year ago helped. Going back on NSAIDs, ( with much care!) has helped. discovering i have Celiac and going on a gluten free diet has helped. And now ditching the BHRT has helped.
I will tell this story to my OB/GYN and see what he thinks about re-trying just the progesterone cream.
But the osteoarthritis is here to stay. And I am a bad surgery risk. My multiple drug allergies makes me even iffier then the average Hughie. ( is there such a thing as an "average" Hughie?). I am spoiled and I know it. I detest this whole aging thing and disease progression thing. ( and I know all of you reading this are smiling/laughing both at and with me at this point.)
I want to hike the West Highland Way again. And the Dingle Way. And the Appalachian Trail. And the Alps. And Nepal. And I know I'm not going to. My inner 8 year old who gorged her mind on "Richard Halliburton's Book of Marvels" is going to have a nice long pout.
But this afternoon, now that the pain and inflammation are better, I think I'll take a nice walk beside the Kanawha River before I bob into a string quartet recital featuring a new composition by a friend of mine.
I guess I don't have time to pout. Too much to do.
Good for you Gina! I guess they should have known better than to try to fool a doctor's daughter. (Smiles) They're just curious people by nature. Good job on that perserverence in elimination of things that did/didnot cause pain, the charting, the entire logical way you listenened to your body and actually all the people here who listenened to their body. Like a big orchestra, all sing a slightly different sound but are playing the same ultimate tune. I hope you continue to learn because when you learn many of us learn out here. Thanks for sharing.
I am so glad for the positivity you wil glean from this. "They" may be stinkers, but you feel better and found the key. I'd take a cetain amount of inner pride in that if I were you.
Hi Gina - can I just ask why you were put on this cream - you mention it was due to perimenopause symptoms - can you tell me what your symptoms were. I've not been diagnosed yet with APS - blood results keep going negative to positive so docs doing more tests but my symptoms also mirror those I read about re perimenopause so never sure whether to just accept them as a sign of ageing or as APS.
The bioidentical , compounded progesterone cream was prescribed when my a fib heart flutters worsened. I was having a few of the typical, Western perimenopause symptoms, specifically hot flashes. ( also insomnia, which i self treated by using a white noise machine.) I thought the hot flashes were quaint, " Oh is THIS what I've been hearing about all my life! So, I suddenly feel like I just walked into a sauna, except I didn't. And this is supposed to be very bad? ".
Well these quaint hot flashes occurred more often and I must confess that my attitude to fellow perimenopause suffers was one of disdain and amusement. I did not rate the hot flashes serious enough to even mention to a doc-much less treat.
But then my a fib attacks began to coincide with the hot flashes. And they became much, much more intense until they felt more like mitral valve prolapse symptoms then the familial a fib. And these new flutters did not go away with a small walk, which is what my Father suggested I do to self treat the a fibs.
So I mentioned these worsening heart issues and one of my docs suggested I try the progesterone cream.
And it worked! Wonderfully! A fibs gone, hot flashes gone, energy levels rose,. I felt great!
Then after a year on the cream my doc had me submit saliva for a hormone assay. And based on the results the doc moved me from the cream to the pills. But I did not benefit as much from the pills. The a fib returned, though not quite as intense as before, but . . . My hip, which had mild degeneration, became very painful. And every week every month, I walked less, exercised less, sat more. It was a no brainer to assume the heart issues resulted from the inactivity.
And here is where my 3 year head banging began. I knew I had OA in the left hip. I knew it would get worse. But to go from walking 100-200 miles a month to less then 10 miles a month within 3 months? The sanctimonious docs, one after one, pointed to the OA and ignored my insistence that: 1, a high sed rate, plus. 2, the huge amount of pain developing over such a short period of time, and 3 , the weight loss ( 20 lbs in 6 months, with no change in diet and less activity,) does not add up to "just" the weather, or the expected progression of the OA.
And I was dismissed. I went for a consult at WVU. Dismissed. (literally.) down to Duke for a consult. $4000 worth of blood work , which showed I had APLS but also a bunch of semi positives which may point to something else. But again, the Duke orthopedist pointed to the worsening XRay and said it was time for the surgery.
What it felt like here inside my body, was that something or things was raising the inflammation and that inflammation was chewing on my hip and making the OA worse.
Then I found this site and found that, contrary to what my local docs had insisted, joint pain CAN and DOES occur in APLS. I pointed this out to my hematologist. He agreed this was so and said my then current INR was lower then my initial symptoms, ( TIA) would suggest would be therapeutic. We raised my INR and my pain was cut by @ 40%.
Then, a new doc suggested moving from the safe but ineffective Salsalate to naprosyn and my pain was cut by another 40%.
Which brings me to eliminating the hormones. Did they cause that spiking inflammation? I have no idea. And at this point making such a connection does not matter. For all I know, the inflammation may been worse without the hormones.
My advice for future patients facing life change symptoms? Listen to your body, and try to make sure you have a doc who listens to you. and remember, " To everything there is a season". I will be on warfarin for life. But most medicines have their time, and it is a limited time. Many docs, despite their deserved reputation for intelligence, seek the easy fix. We Hughies are not the simple fix patients.
Yes I know it's a risky match. That's why I try to take as little as possible. And I am down to 1.5 pills a day, and if I continue to progress. I hope to make that 2. half pills soon.
Aside from menopause treatment, Bioidentical hormone replacement has become very popular because of its use for treatment in other disease. For women, this has become their saving grace allowing them to leave their normal lives.
Howver, it is very important that your doctor is experienced and is an expert in this field. Otherwise, it could just become worst.
Well-- in the past 3 years I did have my hip replaced. All went well except for that next day blood pressure crash. And with the new hip is operating so well I have finally been able to walk the way the physical therapist wants me to. And so, the opposite side knee ( which I broke at age 8 and managed to hide the break --an 8 year old's way of coping with a hyper-emotional family going through a divorce) has hurt ever since.
But I refuse to give in. I exercise and walk 5-6 miles a day. And I'm heading back to Scotland in a few months to hike The West Highland Way again!
The current orthopedist doesnt want to touch the knee " until you're on crutches." (he tried a steroid shot in the knee last year and I went into anaphylaxis.") So, I'm avoiding naprosyn ( which my a fib abhors) and getting by on exercise, increasing mleage a bit every week, and using topical salicylates.
And Scotland here I come! Tomorrow I'll compare plane fare dates and start making the reservations. Hooray!
At age 60 I've no need for any HRT now. The doctor who wouldn't listen to me is no longer practicing. I'll never know to what degree the pill contributed to that accelerating inflammation, which has since settled down to what the Duke hematologist calls " boring" levels. Thanks for the links. I'll dive into them later today.
Now if I could just find a way of convincing doctors ( excepting my allergist, who believes me!) that I'm not deliberately and consciously going into allergic shock to this or that medicine because I want attention.
( if I am doing this on purpose, will someone please tell me how I'm doing it? I could patent the process and I'd be a millionaire in a week! )
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Zyflamend / Anti-inflammatory herbs
Warfarin INR - too high but infrequent monitoring
I'm new here - and glad I'm probably not crazy afterall
