Stay strong symptoms and conditions

Hi! I am a 36 year old female and have been on this HORRIBLE HORRIBLE drug (prednisone) for 2 1/2 years now..... Hopkins doctors still arent sure exactly what i have. My immune system is attacking my liver so to speak. My body is basically looking at my liver like it doesnt belong and is attacking it with large multiple lesions that is eating it away... the good thing is that it hasnt interupted the functioning of it yet but is leaving horrible scar tissue. I have been in and out of the hospital 13 times, have had just about every test imangable, 12 liver biopsies and they STILL have NO clue! They are leaning towards Church Straus desease and Wegners but the weird thing is i have half symptoms of both. The first year they had me on 80 mgs of prednisone a day which had seemed to put me in remission for about 4 months and then they came back even worse so i was put back on the prednisone, 80 mgs a day AGAIN along with 100 cc's of Methotrexate, another not so nice drug... i had EVERY SINGLE BAD SIDE EFFECT OF BOTH DRUGS!! This second time around was ALOT WORSE for some reason!!! My body DID NOT LIKE IT!! Nausea, hair loss, moon face, gained 40 pounds (and i was in great shape, worked out, i am 5'4 and was 110 pds!), EVERYTHING was swollen, legs, ankles, arms, neck, face, had the camel hump, fingers and especially my belly!!! UGH!!! Have bone, muscle, and SEVERE joint pain! Kaliedescope vision, dry eyes and then had mucus discharge (kindof like pinkeye), headaches, intestinal problems.... VERY CONSTIPATED and then the opposite!!! I literally felt as if i had turned into a man in my behind!!! Sorry to be so gross but thats how bad it was!!! Jaw problems, teeth and gums as well, skin sensitivity and have little bumps all over my skin (kindof like tiny little moles), itchy, broke out with acne and pretty much NEVER had more than 1 pimple a month, had facial hair (VERY DISGUSTING!!!! HAD IT WAXED EVERY WEEK!!!!) and then on top of all of that the swelling of my liver not to mention the PAIN! I was recently in the hospital again with 12 new lesions, pneumonia, and 104 fever. My doctors said the Methotrexate was the cause and i was having a bad reaction to it so they now have me on 100mgs per day of Azathiroprine. I am now finally down to a maintenance dose of 5 mgs of prednisone cause my body was starting to reject that as well. I thank god that i am now down to that dose!!!! It as only been 2 wks and the withdrawl symptoms are horrible worse then they were but i know what is to come =) loosing all this fluid and all of the HORRIBLE side effects i listed above. I will have to be on the maintenance dose of 5mgs the rest of my life and can live with that cause when my body gets back to somewhat normal i wont even notice that im on this CRAP!! I will be on the high dose of Azathiroprine for a few years and then on a maintenance dose of that as well for the rest of my life to keep whatever this is that i have under control.... the scary thing is is that they arent even sure that all of these meds will even work...... im a guinea pig..... The only thing that i am on out of all 25 pills/meds that i take everyday that works is my pain meds. Oh and i also forgot to mention that i had to be put on some "HEAD CASE" medication (thats what i call it =) ) for depression. Its a low dose but it does seem to help... I am terrified of what the future holds but continue to be strong and have an amazing support team... my fiance and family =) I dont even want to think about how i would be without them. I go back on the 25th of this month for my MRI so please who ever reads this keep me in your prayers as for all of you are in mine. I feel for each and everyone of you that has to endure this horrible drug everyday and i hope that everything works out you. =)

Sue =)

Hi Ladies,

Just to let you know I'm feeling great, 2 months off of Yasmin now. My sex drive continues to improve, my magnesium when last checked was 2.1 (vs 1.7) and the heart palpitations, arrythmias, and chest pressure have disappeared. I still take blood pressure medication, but I know now that with time I will be able to get off of those.

I forgot to mention in my earlier posts that I've gained almost 20 pounds since I got on Yasmin. I now have to try to lose them, hopefully before I end up pregnant (!!!).

I congratulate all of you that have made the decision to get off of yasmin. Remember what my specialist told me a few weeks ago: "DON'T TAKE ORAL CONTRACEPTIVES. FIND ANOTHER MORE NATURAL WAY". Remember he also said that he doesn't let his wife take them.

I know not everyone has a negative reaction, but for those of us who have it is encouraging to know there are doctors out there that support us and believe us. If no one else, we believe you. Stay strong, you will get better.

IPJ

Dear ladies!

I wish you all a very Merry Christmas!! Remember to stay strong and believe in a better year 2007 that lies ahead!!!

Thinking of you and sending you a big hug!

God's bless,

Silke

Kim,

please remember, that being off a bcp (not only Yasmin or Yaz) for only 6 weeks really isn't very long!! Most doctor's say, that it lasts at least up to 3 months for the chemicals of the pill to leave your body completely, because it's not only in your blood but also in your tissue, and getting out of there takes much longer than getting out of your blood!! (That's another reason why drinking loads of water is so important!!!)

So even if your hormone levels maybe at the same stage than one year ago, there maybe still the side effects of Yaz, that you're experiencing, on top of the hormonal problems you've mentioned!!

Please Kim, try to stay strong and give it more time, 6 weeks off that pill really really isn't enough to say, you have to feel well again at once!! This is no cold or a flu we are or were going through!! Hormonal problems can't be solved within a few days or weeks, it definitely takes months (should be clear alone by the fact, that our cycles last about one month!).

And if you feel that an antidepressant might help you, please give it a chance. I still don't know if you had already tried the Valerian, I've mentioned a few posts before (well, although, as bitter RN told, you should not take it together with other antidepressants as ssri or such!!). I found this a very good little helper during my hardest days. It always helped me to calm down and at night it helped me to sleep. Please think about it.

Best wishes to you and I'll send you all the strenght I have left over to stand this Kim!!

Silke

hiya silke

so sorry to hear your not well yet again.

at least you got your period regular, i think that this is a good sign silke, i think this shows that your body is slowly trying to regulate itself.

i have had regular periods since coming off yasmin, but noticed that the first six came every 22 days just like when i was on the yasmin but the last 2 came after 27 days. the first 2 off yasmin were really bad but then started getting better slowly,the first one that came after 27 days was awful, really heavy and so unbearable but the last period i had has not been too bad.

the conclusion i have come to is that before starting the yasmin my periods used to come between 24 and 27 days so my cycle is trying to get back to normal slowly.

i think the same is happening with you, slowly but surely your cycle will regulate itself. the first period is always really bad after coming off yasmin. you might get some light and some heavy cycles, but silke believe me they wiil get back to normal and you will be better i promise.

remember what you kept telling me, you will get better slowly, you will have good days and the bad days but one day the good days will over-ride the bad days.

i really hope this helps, i know i am waffling but i hope you understand what i am saying, if not post back and i wiil do my utmost to explain what i am talking about

you takecare and stay strong

thinking of you
sophiexx

hiya silke

i have been checking the forum regular, you have not posted for a while.

i really, really hope your ok.

remember you have to stay strong and keep fighting this, everything will be ok in time.

god bless you

sophie xx

I was on Yasmin for a little over a year and I have just come off Yasmin a month or so ago after suffering so many side effects, such as crazy water retention and swelling as a result, rapid weight gain of 30 pounds (!!) despite no changes in diet, exercise or lifestlye (other than taking Yasmin..), mood swings and general weepiness, literally no libido or interest in sex and vaginal dryness, cramping virtually all the time, severe breast pain, etc. I decided enough was enough and I was going to stop taking it or any other type of pill because I wanted my body back and I wanted it to be normal again. For anyone having problems with Yasmin I'd say come off it asap because the difference for me was almost immediate after coming off it. I felt SO much better in general and all my symptoms went away. The first week after coming off Yasmin I broke out in spots and I had horrible headaches but these all passed after that first week and slowly everything is going back to the way it was - my sex drive came back about two weeks after stopping Yasmin and it is back to how it used to be which has been a welcome miracle, my cramping and breast pain are gone (yay!), my moods are stable and happy, I didn't even miss a period (which is probably unusual) and went straight on to have a normal cycle, and overall I just feel like my self again. The only thing I need to battle now is the weight gain but actually within four couple of days of stopping Yasmin I had already dropped 3 to 4 pounds and I did absolutely nothing to make that happen. Anyway, I wish everyone out there good luck with everything and don't give up hope becuase you will go back to normal once you stop taking this horrible drug. Stay strong! It will all get better and you are not alone with these problems.

hiya silke

ive just read your posts.
im so, so sorry to hear that you are not feeling well.

i,m sorry i cant be any help as i dont understand why this is happening to any of us. all the knowledge i have has come from other ladies on this site and especially from you.
i thank you so much for that!

all that i can say is that be very strong. remember i had only been taking it for one year and feel awful most of the time and have only been of it for nearly seven months, but you had been taking it for 5 years so its probably just going to take a while longer for your body to get back to mormal.

please try and be calm and try not to think about it to much, keep telling yourself that you ARE going to get through this, just like you kept telling me silke, remember!

you have been a godsend for me and all the other women on this site, believe me!

you have been there for me and if i can be of any help to you. please let me know

god bless you silke, i really hope you are better soon
remember! STAY STRONG!!!!

to any other ladies out there who have been on the yasmin as long as silke, please please reply to her . she really needs you!!

SOPHIExxxxxx

Claudia-
I too quit Yasmin almost a month and a half ago and am going through all of this as well. You can read my previous postings for my story. I wanted to share with you something that has really helped me. It is a herbal supplement called Valerian. In high doses it is used to help insomnia but in smaller doses it helps calm anxiety. And it is obviously natural which makes me feel good especially after the nightmare I have had putting synthetic hormones into my body. Anyway I find that if I take one Valerian pill the moment I am feeling an anxiety or panic attack coming on I tend to feel better within about a half hour. That is just me though. Another thing that helps me is coming to this site when I am not doing well. The support I feel here is endless and I like coming to this site because I feel understood. Please know that I along with thousands of other women are going through this with you. Please stay strong and know that you and all of the other women are in my thoughts as we battle this together.

Hi Guest 25816!!

It seems that Yasmin brings every body, or better, its metabolism extremely out ouf whack. And I think it's pretty normal, that after 2 months everything isn't yet back to normal!!

I don't want to discourage you, but I've been off Yasmin for over 1 year now and still didn't get my normal period, yet... And during the last week I surfed the web and searched for my symptoms, which I still got (though not at all as bad as WITH Yasmin!!! Everything has gotten 80% better than around one Year ago!) and all I found were sites about menopause....

But I also think (and I really BELIEVE!!) that in our case (we're really not old enough to get menopausal, I'm 31) it's just a hormonal imbalance, which will be gone if only we have enough patience. And you also should remember, that every person ist different and in your case your body might recover much faster!! I don't know how long you had been taking Yasmin, in my case it were 5 long years, without realizing, what that poison was doing to me... So I think it's very normal, that it takes my body longer than others to get back to where it was before Yasmin!!!

Stay strong and always believe in better times and remember to be patient and not to give up!! I'm sure some day you'll have a sweet baby in your arms and that Yasmin-nightmare will be completely forgotten!!

Best wishes!

Silke

UPDATE - 4 MONTHS POST YASMIN TODAY//////

Lisa here,

ok on yasmin i had all the side effects all of you listed, went to er 3 times thought i was having a heart attack, bad bad anxiety, severe depression.
went off yasmin first two months were HORRENDOUS...then on month 3 i posted on this website IS IT GONNA GET BETTER and silke replied it would ( man i had my doubts) I am a mum of three kids and i struggles each and every day and had to go on, thought i was going to die and every turn the fear factor was horrible.
Now 4 months on i feel like me again ( almost)BP has returned to normal after a long 4 month battle and i am coping so much better, the anxiety and heart racing just comes and goes now rather than all the time and i feel great. I have even began my own business something 4 months ago iwas asking could i even work.
to all the have stayed with me SILKE, CHRISSY I THANKYOU from the bottom of my heart. Its still a battle but i know i am going to get there but i could not have done this without you all.
To those just getting off yasmin youre gonna get there, i was so bad with the side effects i thought i was going to die and look at me now. DOnt get me wrong its not prefect but i feel like im living and 4months ago i felt like dying.
Stay strong and keep posting , we can all help each other

Love lIsa

BLOOD PRESSURE READING

Lisa here girls, soory a little excited today my blood pressure reading was 125/80 i feel soooo happy

had to share

STAY STRONG GIRLS

DEAR TWO GIRL MOM,

COngrats you have made it through period 1, just remember thats the beginning of the end, it was hard I KNOW, its was STRESSY i know and the palps were horrible , been there eah month also but you are 1 period closer to being rid of all the bad things yasmin has done.
I too stopped the pill and restarted it i was on it for 2yrs went off and had mirena inserted for 1 month ( pure hell) and then restarted the pill for 3 months before i found this haven of yasmin sufferers.
remember the anxiety and everything is always worse when youre period is due , just after and ovulation so maybe take that into account and you made not need the paxil as high in the inbetween of your cycle ( just a thought) .
My BP is that also if that makes you feel any better and the lighthead i had also for first 3months really bad with the blurred vision.
YOU WILL GET THERE. STAY STRONG

Lisa

Dear two girls mom,

very very normal almost every post i ever read said the anxiety and palps were bad around ovulation and period. I am 4mths off yasmin and am due for my period any day and have them also and i posted the other day to see if others still got them the same way.
stay strong
lisa

Hey Hill!!

You wrote:
< to take any hormonal bcp ever again in my life!!!

All the best to you!!

Silke

anyone tried FLAX SEED OIL CAPSULES, my naturapathy shop told me today that they are great and help lower bp and also help with some of the syptoms we are having . also went to hairdressers today and when i told her about my hair loss she looked through and told me i have lots of new growth approx 3mths worth , funny thats the time i stopped that poison.

stay strong girls

Lisa

Hi everyone! To answer the questions about the hair loss, it will stop. I started losing my hair about a month after stopping the Yamsin (August 2004), I have noticed in the past few months that my hair is getting thicker. I had lost about half of my hair. My beautician told me I am lucky that I had thick hair because if I didn't I would have had obvious patches of hair loss! I am NEVER going on bcps again!! My husband is going to get a vasectomy soon. I am lucky that he is so understanding and don't think that I just a crazy women! It's been almost a year and a half and I still suffer from side effects especially the week I am ovulating. Anxiety, depression, negative thoughts, heart palipitations and my face is constantly flushed. My dr put me on Zoloft May 2005 and it seemed to help for a while but I think because its the hormones that are my problem it isn't really working anymore. Adavan works much better when needed.
Stay strong ladies!!
Oh, I had to laugh at my husband the other night, he thinks we should all band together and sue the pants off of the makers of Yasmin!

Dear Two girls mom,

STAY STRONG.... I have been off the yasmin since nov 9 2005 and let me tell you the first 2 months were just like you have described, i thought i was going to die, is has started to get better although i had horrible headache and anxiety and depressed on day 4 off my period this month it was not like the other months that it consumed my entire life.
it is hard i know and you feel like its never going to get better and i am still struggling with high bp thanks to the pill but its gotta get better, i just look at all the people like silke,chrissy,and shelly who continually post and that gets me through, they are longer than us and they are surviving and are getting better so can we....
YOU WILL GET THERE, deep breaths,a natural relaxant ad magnesium help with the palpitations...
good luck
lisa

Hi Chrissy!!

<>

DEFINITELY YES!!! I had those weird feelings, too, and still do some times in a slighter way!!!

This was one of the worst symptoms during the very hard time being on Yasmin on December 2004 to around March 2005, when I felt like my life was about to end......

It felt as if anyone took my brain between his hands and shaked it!! Someone here in this forum described it as an "earthquake in the brain", and I think thats how it's described best. Did you mean such feelings??

Well, nearly a year ago that was so cruel, that I wasn't able to watch tv with sound (I always had to switch the sound off or put it to a very low level...) or listen to radio or any other noise around meor even reading anything especially read something on a pc screen, everything seemed to be too much to take for my brain... I had to sleep with some cotton wool in my ears because every slightest noise made me think, my brain was shaking and cramping!!

Well, I found out, that this maybe a symptom of that heavy loss of vitamines and minerals that's definitely caused by Yasmin, especially magnesium and b vitamines (do you say so in english???) is able to cause such weird symptoms, even anxiety and so on....

Well, it maybe worth a try to take some supplements against this. I'm taking some magnesium every few days and it seems to help with these feelings in my head and even with the anxiety and stressed out feelings.

To everybody out there suffering under or after Yasmin: Stay strong, a better year lies ahead!!

A very merry blessed Christmas and a healthy, happy and strong new year!!

Silke

PS: I'm going through very strange thoughts at the moment, because exactly on January, 1st 2005 in the morning I was taken to the ER, thinking I was about to die...... Not easy to forget all these shocks and hard times brought on by this wonder pill....

Hi Sherry!!

Sad to hear, that you're still not doing better with the weight... But please don't be despaired about what your doc said (1/2 year to let all the symptoms go away...). I've heard from so much women (they've been told so by their doctors!!) that it can last about a year or even longer to get finally back to a normal hormonal balance and fitness and weight (well, I think I've posted this already a few days ago)!! It's so different in every woman!! No doctor should say or perhaps even swear that everything has to be fine again after 6 months off a bcp!!

That's the only thing that keeps me up, when I'm brought down again by all these horrible things that happened to me within the last 3 years and especially withing the last 9 months... (Still got no regular period after getting off Yasmin in february this year!!!).

And I'm afraid that until my regular period is finally back, there'll be either no chance to get off all that "pudding" I've gained, not to talk about the withdrawal symptoms of Yasmin that I'm still hit by from time to time...

So Sherry, and everyone else out there, stay strong and don't lose hope!! I'll try and give it a year as some women said and see, what I'm looking like then and if my scale is finally moving someway down... That means for me, another 6 months (I think about may or june 2006...) with lots of heavy bones to carry every day which gets me sometimes really out of breath... absolutely different from my old self...

And please: It would be so helpful to hear, if there are women out there, that went through the same torture as many of us (the weight gain AND all of the other horrible symptoms) and perhaps are finally doing better after months or even years!! It's so important to share every information anyone can give us about this nightmare!!

Take care!!

Silke

<>

Well, if you would have read more of the posts here, you would know, that you're going through the same thing, so many women are going through AFTER getting off this "wonderful" pill... And no one can promise you that you will be healthy again wighin a few months but just give you some pep talk during these hard times! The only person who could tell, how long it takes to fully recover would be a woman, who has gone through the same as we and is finally back to where we all want to be again some day!!

I've been off Yasmin for 10 months now and still not back to totally normal and healthy again, although everything has gotten so much better than in January/ February this year. This times I nearly wasn't able to live any longer...

And still there are times, when I feel, like everything is easing up and nearly gone and then many symptoms hit me again. And that all seems to happen through a cycle.

You should have a look at the days, when you feel really bad with anxiety, heart palps, and so on and perhaps note them in a diary, so did I. And I can see that every 4 weeks I feel really bad again (my hormones are not back to normal at all, didn't have a period since easter this year!!!)...

all the best to you out there and stay strong everybody, I'm trying, too....

Silke

Hi Voice-bloated and fellow yasmin sufferers,

Just doing an update post on how i'm coming along these days. I'm 3 1/2 months off yasmin and the weight gain/bloating is still there. Remember this is only after being 4 months on the pill. Only got 1 period after taking provera to induce menses and i'm waiting to see when I'll get the next one. Like BLOATED- I also used to be a size 0-2 and now i'm bursting out of a 6. you can well imagine how i feel. (sigh) Yasmin has kept me from the beach all summer long. I haven't even gone swimming once. I've started to think that maybe i just have to come to terms with the fact that I have turned into a blob from this once upon thin, fit figure i used to posess.
Everyone keep posting here and let us know how you come along. your progress only inspires us and helps us stay strong.
Love U all,
Sherry

@ fairsjk:

It is DEFINITELY not enough to be off that Yasmin shit for 6 weeks to fully recover!!!

I've been off that drug now for 5 months (!!) and I'm still not really back to normal!! Especially the mental symptoms take much more time to get back to a normal level!! I know what I'm saying!! But at last there are very good days between the worse days. Well, but everyone should give it much more time that a few weeks or months.

My research in the internet and talking to my family doctor brought out that it might take nearly a YEAR to be back to 100% normal. That depends on how good your hormonal system is working. Therefore ( and unfortunately in my case...!) it may take a pretty long time until the hormones are finally back in balance again and all the symptoms brought on by Yasmin may disappear.

Just stay strong everybody, there are better times ahead!!!

I'm now taking a natural medicine called "Mönchspfeffer" here in Germany (other name: Agnus Castus) which should help to get the hormones back in balance a little bit faster and lighten symptoms of PMS, such as depression, water retention, headaches, and so on. I've been on it just for a week so that I can't already really say if it works. It's a natural medicine, so it may take about 3 months to see it it's really effective and working good for me. Maybe it's just a little hope for some of us.

All the best to you out there!!