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Post by cherry on Nov 26, 2007 8:26:02 GMT -5
GnRH analogues are a hormone treatment which generally pause your ovary function for a while, putting you into a chemical menopause for 6 months or however long the term is. They are given in the form or monthly/3 monthly injections, or daily/twice daily nasal spray. These drugs are most often used in treatment of prostate cancer in men and some in breast cancer treatment too. A lot of doctors will only give up to 6 months on a treatment as there is no evidence as to whether it is benificial to continue more than 6 months for a benign disease like endo, given the possibilty of brittle bone disease and other cancers being made more likely. As far as I know, the treatments we have had so far on the board have been Lupron (very popular) which is injected, Zoladex which is injected, Prostap 3, which is injected every 3 months and is also given monthly as 'Prostap', Gonapeptyl as a monthly injection, and Synarel, which is twice daily as a nasal spray. I think it'd be helpful to those of us who are being offered (or pushed into taking up) GnRH treatments to see the side effects we have experienced, helping a little with the decision as to whether they would like to go ahead.
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Post by gemini on Nov 26, 2007 15:44:30 GMT -5
Great thread Cherry I've been offered(pushed more like it) Lupron but after reading the horror stories, i can't go ahead with it
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Post by cherry on Nov 28, 2007 8:01:21 GMT -5
My treatments have been Prostap 3 (injection given once every quarter), and this year I had Gonapeptyl (injection given once every month) I had Prostap 3 the day I was given my diagnosis in 2006, and as such I had no idea what it was besides the quick description the nurse and my gynae gave. My doctor gave me HRT to alleviate the symptoms straight away, Livial. This HRT is touted as being especially good for those of us going through chemical menopause on GnRH treatments. The side effects I had included headaches, forgetfulness, lack of concentration, loss of appetite leading to dramatic weight loss, tiredness, mood swings and very dark moods, hot flushes and sensitivity to temperature, acne, greasy skin and greasy hair, dandruff and dry skin (strange but true), eczema, inabilty to communicate well due to problems with thinking and memory. Also loss of sex drive and vaginal dryness. I also had a lot of hairloss and a lot of hair growth. There was also a general feeling of illness, that although I wasn't sick during the treatment, I felt I couldn't shake off. At the time, I still experienced abdominal pain, and it was increasing in intensity and frequency, felt like it was changing too. Because of the side effects, I had a big loss of confidence. The greasiness, spotty face and loss of weight, as well as being unable to carry a decent conversation made me want to be alone a lot, and as such my relationships suffered. I did find that I grew to know myself better, was happy in my own company and took up a lot of good habits. Like I ate better, gave up caffeine and fast foods as well as ready made foods, developed much better skin and haircare routines and tried new things to make myself feel better. I was also assertive with the doctors about what I wanted, having been too timid to say 'let me think about it' when I was told I would be having the injections. With what I had felt, and the pain I continued to be in during this treatment, I didn't feel it was worth it. I had meltdowns because it affected me badly. But I do find that I am sensitive to side effects from painkillers, medicines and even vitamins and supplements. I was not so sensitive to the pill as others though, so I'm not sure whether this would indicate how well you would take to GnRH hormones. I had Gonapeptyl this year straight after surgery, and continued for 2 months. Because I had much of the same side effects as before, I stopped after 2 months, as I have a mirena fitted and hope it will be enough. I think I forgot how miserable I was the last time. With the Prostap 3, I was also going through a very difficult time personally, so everything seemed worse. I feel that the Gonapeptyl has benefited me this time as it will have stopped the recently removed endometriosis from growing back so quickly if at all, gave me a chance to heal without having a period, and because it overlapped with my new Mirena being fitted, I didn't have any of that bleeding that so many women with a Mirena seem to start out with. I did find that with Gonapeptyl, I felt much better when I didn't have my HRT. So be aware that HRT has it's own side effects, and I felt better without it. Good luck to you if you are deciding on this treatment
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Post by cherry on Jan 10, 2008 15:34:21 GMT -5
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Post by puddleduck on Jan 24, 2008 8:59:02 GMT -5
Hi there,
Since my third monthly Zoladex injection I've noticed my short term memory is poorer and my verbal recall skills are slower. It's undoubtedly the drop in oestrogen that's causing both.
I wondered whether others who have experienced this have found ways of combatting these "senior moments"(!) without HRT.
I look forward to hearing your experiences!
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Post by cherry on Jan 24, 2008 9:42:19 GMT -5
Ginkgo biloba and fish oils ( i doubled up the gingko for 2 weeks to help the loading stage and just had cod liver oil for my joints) are good for the memory loss I found As for the inability to talk, I know that reading aloud to yourself may be a good way to try recapture some of that communication magic, but I just stopped talking altogether. The side effects I had made me feel isolated and worse still I felt I had to hide away, I embarrassed myself a few times. Don't let it push you underground like I did!
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Post by Nari on Jan 29, 2008 5:46:58 GMT -5
Oh ya.. i did forget to mention that lil wonder that i have too from my Lupron. The "duh" moments.
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alig
New Member
Posts: 7
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Post by alig on Mar 22, 2008 17:29:21 GMT -5
I've ummed and ahhed as to whether to post here, as some ladies love the GnRHs, some have hated taking it. Before you read my experience of Prostap please remember that everyone is different, and what works for some doesn't work for others, and just because my experience of Prostap wasn't great it doesn't mean yours won't be if you are considering taking this drug or any other GnRH. In the same vain, if you are unsure as to whether to take a GnRH don't be afraid to try other options, mention your reservations about the drugs to your gynae or stop taking it should you start but become unhappy with it. I took Prostap after visiting my gynae and virtually asking for a hyst as I was so fed up. Obviously a hyst is a very drastic step, so they suggested I try a GnRH - if that worked and took away my pain, then they basically said a full hyst would work. My gynae hadn't talked in depth about the side effects, but I'm the type of person who got straight onto the internet when I got home that night to have a good look at what it was I was about to take - pros and cons. The Prostap worked in that it took my endo pain away - virtually straight away. It was if my hormones shut down as soon as it was injected - some ladies have bleeding for a while after the first injection - I had none, and my moods (before I started to take the Prostap I was all over the place) levelled out quickly. I was on the pill back to back before the Prostap, and had bled every month, which totally defeated the object of taking it back to back - the Prostap stopped my periods immediately. I started to get hot flushes quite quickly, but as they were mild I coped fine. In fact for the first month I felt better than I had in a while, and as I wasn't bleeding was pleased to be on the drug. I trotted happily to see my GP for my second injection, and it was 2 weeks after this that the side effects of the drug started to become unbearable. The side effects almost appeared it felt overnight. I looked in the mirror and saw a face looking back at me which I couldn't believe was mine. My skin was sallow and my eyes sunken, brown circles had appeared under my eyes, my face was a mess with spots - I looked 10 years older. I felt better internally as I had no pain, but the severity of how I looked made me think about how severe the drug was that I was being injected with, and it's long term side effects. My hair started to fall out, bruises and cuts took an age to heal and disappear ( apparently Prostap can alter your white cell counts?) and I felt so so tired. I suffer with chilblains and bad circulation, and my toes were more purple than ever before and my ankles were as swollen as they were when I was 36 weeks pregnant! I was struggling to remember things, lost my appetite and decided that although my endo pain had eased I wasn't prepared to carry on taking a drug which caused so many other unpleasant side effects. Hot flushes were regular, but bearable (I have always been a person who felt the cold, so in some ways in the middle of a British winter having my own central heating system was the only bearable side effect of the drug. However it would've been hell in the summer!) Even though I wasn't naive to the side effects before I started taking it - I wasn't quite prepared for how the drug did affect me, as silly as it sounds I didn't think the side effects would be so severe. I guess unfortunately as with all drugs you don't know exactly how they will affect you until you start to take it. After a long talk with my hubby I decided to stop taking the Prostap - my next gynae appointment is in July and I've no doubt I'll be discharged from them for now as for the time being I don't want to take any more synthetic drugs. Whilst on Prostap I didn't take any HRT, and I only had two injections - even if the side effects settled down with HRT or after a longer period on the drug I would've stopped taking it - the side effects were too powerful and severe for me. HRT may have made them better, but in a masking way. To finish my story I'm waiting for my period to begin (it's 3 weeks since my final injection). The side effects are starting to wear off, and for the first time in 15 years I will have periods whilst taking no synthetic drugs. That does scare me, as I know at some point I will be in pain. However I've started to see a Homeopath, and at the moment feel better than I have done in months....I was sceptical of trying a homeopath - it was my other half who convinced me to try it, and so far I'm quite chilled and pain free. I won't go into that though, as it's not the right thread and not everyones cup of tea. I hope my account of Prostap has been informative without being alarming, and if anyone is considering a GnRH as a treatment option I wish you love and hugs and I hope it brings you some relief. Ali xxxxx
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Post by jjuls22 on Apr 21, 2009 8:30:08 GMT -5
Hi Ya'll
Im on lupron monthly shots, and im about to get my 4th shot. I have to say that i absolutely PAIN FREEEEEEEEEEE ;D but it does come with a price. my side effects sound a lot like cherrys but not as many! I am NOT on any add back therapy as of yet. I am also on celexa (anti depressant) My biggest problem is headaches, they aren't constant but when i get them they hurt like hell! Nothing kills them, not even vicodin. I believe its due to the lack of estrogen in my body, i would assume that add back might help these. Over the last month ive noticed memory loss, repeating converstations, short term memory loss, not being able to complete sentences, inverting words. Even though i am on anti-depressants, lately my moods have been getting worse i feel more like im in a hole that i cant see out of. Im thinking more irrationally than ever. I have no sex drive period. which sucks because im finally not in any pain!! I do feel that i have some issues with my vision, i feel that its gotten worse. On the flip side, i have my life back. I can exercise i can eat what i want without thinking if its putting me in pain. I dont have to keep my drugs with me at all times, or my tens unit. I can go to the bathroom without being in pain. Im about to go on add-back and im scared.
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Post by jjuls22 on Apr 23, 2009 21:28:42 GMT -5
ok i seriously think im going crazy, possibly bi polar or something. I think have another effing UTI, which would be the 4th one in the last three months... has anyone else experienced this while on lupron? I cant keep my emotions in check. I just started on add back, and im not sure if its going to be enough to get me out of this depression slump. I get my next lupron shot on monday im considering not doing it because this depression is sooo bad. any suggestions?
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Post by cass on Apr 23, 2009 22:29:12 GMT -5
Hang in tehre hun. it takes a little bit for the HRT to kick in and counteract whats going on. I know it definitley helped the way i felt which started off with headaches and sadness.
If you are feeling that depressed on the medication make sure you talk to your Dr. about how you are feeling before he administers the next shot. If you dont feel you can cope with it then dont do it.
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Post by cherry on Aug 13, 2009 8:06:40 GMT -5
Right, going for my 4th shot of Gonanpeptyl in 20 mins, and I've had periods throughout. This seemed to me a bad sign, and is agonising on top of my weird post op pain, but my gynae advised that it can happen. Therefore if I'm still bleeding, despite these injections and having a mirena, is there any point in my continuing the treatment. I've lost weight as before, gotten very greasy and sweaty, but no benefits. I can hardly walk when I have the period, and I spot often. Any advice or thoughts ladies? xx
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Post by cherry on Aug 13, 2009 8:51:30 GMT -5
Oops I dodged the appointment. Chickened out, cos I can't stand the side effects and pain for no reason. I'm sure my docs will all be p**sed but what the hell can I do anymore.
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Post by Karen on Aug 13, 2009 9:34:06 GMT -5
I don't know much about GnRH and certainly can't speak from experience, but if you're feeling crappy on them and not feeling better, I'd likely dodge the appointment, too. Best of luck with your doc!
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Post by cherry on Aug 13, 2009 9:47:30 GMT -5
Yeah I tried to stop being such a cry baby and just dig in, but today I got another period in line with my sister's cycle (I had one last week too) and just kind of snapped. I've called the patient services team and will discuss it with my GP. I just think it's wasted expense for the health service and me, and it's taken such a physical toll that I can't justify or ignore anymore. I can't put on a bikini looking like a stick figure with an ass drawn on!
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