Can Prostap Cause Long Term Joint Problems? - Endometriosis UK

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Can Prostap Cause Long Term Joint Problems?

Eggcustard profile image
14 Replies

Hi everyone, I have had two courses of prostap, one for 6 months and the other for approx 18 months. My last injection was about 6 months ago when I had a total hyst and I still have very bad bone and joint pain. I am waiting to see a Rheumatologist.

Has anyone else suffered from long term joint pain after stopping prostap?

I also have memory problems that haven't improved either.

I have read that prostap should only be given for 6 months, I assumed the side effects would stop when the injections stopped.

Could it be the prostap?

Thanks

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Eggcustard
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14 Replies
stevieflp profile image
stevieflp

Hi - I don't have personal experience with Prostap as I chose not to go down that route. Having suffered a pituitary tumour previously - I asked my consultant when she recommended I take it, if taking something like Prostap which affects the pituitary gland would risk setting this off again. Bearing in mind she was a general gynae and not an expert endocrinologist she gaily told me straight away "No. no it will not be a problem". I would have respected her more had she said she would look into this to confirm. However, my own instinct and then backed up by research freely available on the internet, showed that this drug was not recommended for anyone who has had a pituitary tumour! To think I might have blindly followed her glib advice! Anyway I digress from your post.

As you had a total hysterectomy six months ago, the symptoms you describe are some of those that can be experienced with menopause, and which are the same symptoms as can be caused by Prostap, so may not be all down to the after effects of the drugs. It could well be a combination of the two things, as I understand that it can take sometime for the drug to completely clear from the body after cessation plus you have the menopause from a total hysterectomy. Impatient has much more techinical knowledge of this drug so it may be worth looking up some of her posts, and other ladies who have used this drug.

I have hit the run up to menopause now and use bio-identical progesterone cream from Wellsprings as it helps to allieviate some of these menopause symptoms you describe (I had joint pain / breast tenderness / fuzzy mental function and sweats). Estrogen does fall at this time but not quite so quickly as progesterone and it is the drop in progesterone that tends to cause most of the symptoms and can cause estrogen dominance even in peri / menopause.

Estrogen dominance is also thought to be a contributory factor to exacerbating many common conditions. Worth doing some reading up about this if you have not already done so. The Wellsprings website is good and also Estrogen Dominance by Dr Michael Lam. Articles on the web by Dr John R Lee and also. Dr Ekhart's How to Use Progesterone Cream.

Cutting out xenoestrogens from toiletries, cosmetics, laundry liquid / household cleaning products can help to reduce the exposure to chemicals that mimic estrogen in the body (which incidentally wont show up in any hormonal blood test as they are not actually hormones but cause the receptors in the body to react as if that hormone was increased).

The pharmaceutical companies say the levels of these in their products is negligible (they use these chemicals because they are cheaper/increase their profits and give a longer shelf life). However, when you consider that we use shampoo/conditioner/hair mouse/hairspray/bath stuff/body moisturiser/facial moisturisers/cosmetics/toothpaste/laundry powder/and exposure to household sprays/cleaners - it mounts up. Petrochemicals and other nasties are also not nice. There are many non-chemical alternatives available now.

It takes about 3 months for xenoestrogen effects to decrease once exposure is decreased. For this reason, it is recommended that you take steps to reduce these prior to using bio-identical progesterone, other wise you may get the same initial results as when starting Prostap etc (i.e. an initial increase in symptoms). If you do a de-tox by cutting out these chemicals for 3 months, then this effect will be less noticable. Having always been extremely sensitive to hormone fluctuations and having initially had menopausal symptoms in the peri-menopause run up, I am convinced it has been helped by cutting out these chemicals, plus the bio-identical progesterone.

None of the above is generally recognised by the medical profession who tend to treat symptoms with drugs manufactured by the pharmaceuticals (synthetic hormones which are not bio-identical) and do not take a wholistic approach to symptoms.

Eggcustard profile image
Eggcustard in reply to stevieflp

Thanks for your very detailed reply. Sorry that you have had so many health issues to deal with.

I need to look at all of the things mentioned in your post in more detail.

I am very interested in the estrogen dominance information, so the link you have given will be very useful. Xenoestrogens I am also keen to learn about for my daughters sake as much as my own, anything I can remove that may influence her future health is a definite help. After the prostap experience I am also keen to look at bio-identical hormones.

I think it's going to take time for my system to settle down, with the prostap and hyst my body has been through so much. Fingers crossed for no long term damage. The first time around it took 6 months for the prostap to leave my system and I dare say my body is all over the place at the moment.

There's still a lot to get my head around!

Thanks so much for the info.

Impatient profile image
Impatient

Prostap is theUK nae for Lupron.

Lupron and the other GnRH drugs has thousands of victims suffering long ter side effects after being on the drugs myself included. Just 4 months and y short term memory was wrecked.

lupronvictimshub.com/index.... is the Lupron/Prostap Victims Hub.

nwhn.org/lupron%c2%ae-%e2%8...

lawyersandsettlements.com/a...

dailymail.co.uk/health/arti...

All the GnRH dugs work the same way and therefore carry the same risks short term and long term.

So sorry you join the cub. 6 months max in a life time is the most that the anufacturer recommends because the drug DO cause bone density loss and it is clearly stated in the patient information leaflet.

Any decision to extend the use beyond 6 months is at your own risk, and you have no come back on the drug company but you may have against the GP or specialist that prescribed the extention of use.

Regards the memory loss, mine has improved slightly or rather perhaps I'm coping with it a bit better, but it is still massively debilitating.

also as stevie says the hysterectomy and HRT may be having some impact too, but for my money, it is more likely to be the Prostap, given my own experience with GnRH and how damaging it can be.

I still have a working ovary and no need for HRT and was not offered HRT while I was on zoladex, so cannot blame either for my memory probs.

Hope the rheumatolgist can provide you with some hope of relief of joint pains. The joint and limb pain i had on zoladex was very unpleasant indeed but mercifully in my case did resolve when I stopped the drug.

Very Best of Luck to you.

Jaypalf profile image
Jaypalf in reply to Impatient

Impatient,

Somebody in reply to one of my posts a short while back mentioned you would be able to give some insight into what a "nasty" drug Prostap is. I don't suppose you would mind telling me a little more? It's been less than a week since I had my first injection but I'm already having some side effects which I don't remember from the first time (perhaps because I was also on HRT the first time around). I have had chest pain and some palpitations and also a number of panic attacks and unpeasant hot flushes and really phased out/unfocused. I was slightly dubious about being put back on it in the first place but the consultant (who I'd only met for the first time this time around as it was through a different hospital) said I would be fine because I am young (24). Her plan is for me to indefinitely be on/off of prostap possibly until I decide to have kids (something I don't really think I want) and I'm really worried. My fiance keeps telling me I have to trust the NHS system and the doctors know what they're doing and I shouldn't question in but I don't think he understands. I feel like prostap is far more sinister than the consultant is making it out to be and at the same time as not wanting to read a load of stuff and scare myself, I also don't want to have been rushed into something that isn't going to be good for my health - do you have any articles/research that you could perhaps link me to? If I decide I want to backtrack and I'm really unhappy do you know if it's possible to stop prostap after you've started? I've booked a GP appointment to talk about it but I want to feel clued up in the meantime as I'm really not sure what I want, who I should trust or what is best for me. I definitely know that I can't continue with palpitations and panic attacks though, I think I would genuinely rather go back to the endo symptoms :( feel like I'm stuck between a rock and a hard place....sorry to harrass you for information, just all your previous posts have been so informative it's good to feel like I'm asking somebody in the know...

(Eggcustard - sorry to hijack your post with my own questions, I'm just starting my second course of prostap and the more I read the more worried I am.)

cuddlybear profile image
cuddlybear in reply to Jaypalf

Hiya...sorry for butting in on your post but just thought this may be of some help. I googled Prostap and got information leaflet that you would normally get from your chemist when you get prescriptions listing side effects, what to look out for, how much you should take, precautions etc. You will find loads of extra links on the page that could also help you find all the info you need. Read my post below....Best of luck:)

Eggcustard profile image
Eggcustard in reply to Impatient

ooohhh reading all of that is so scary, really hoping it will resolve itself as my hormones settle down. As it's called lupron in the states I didn't know all this prior to having the injections but have read up since.

I don't remember being give the information leaflet at the start, then the injections changed to being administered by the gp so I would collect them from the chemist and hand them to him but I don't ever remember reading the leaflet and was never warned about the 6 month limit. I did mention it to someone (GP or gynae) at one point after seeing it online and they said not to worry because I was taking add back so no damage would be done. There's always a huge side effect list with whatever you take so I assumed it would be just that, side effects that would disappear.

I post again after seeing the rheumatologist, wish me luck xx

cuddlybear profile image
cuddlybear

Hi, my consultant put me on the prostap injections a while back and told me the longest I could get it was for 6months only.....to be honest I thought this was safe and genuinely believed it would finally give me some pain relief, it didnt. I also had a hysterectomy 7yrs ago at the age of 34 and was put on hrt and had no problems with memory loss or joint pain. In regard to the prostap I had 3 injections in total and then refused to have it. The memory loss was major and it has only improved slightly since stopping 3months ago. Regarding your joint problems only last week I was diagnosed with rheumatoid arthritis in my ankles,elbows,wrists and hands and was completely shocked when the consultant told me that both were more than likely a result of getting the prostap injections, I only had 3 injections and now left with permanent damage and another illness on top of the endo. As I always say each and every one of us reacts differently to meds but I havent come across one person who can say anything good or positive about prostap. Hope you get sorted soon :)

Eggcustard profile image
Eggcustard in reply to cuddlybear

Thats really shocking, I am sorry you are having so many problems. I have read about people being diagnosed with arthrirtis and being told it was due to prostap but can't believe that they prescribe something that can cause that kind of damage and gp's/gynaes don't seem to be aware of it. I had a blood test for RA and it was clear so hopefully not that, sorry it was for you though. As if endo and hyst wasn't enough to deal with.

Thanks for replying to my post and I hope you are feeling OK today xx

cuddlybear profile image
cuddlybear in reply to Eggcustard

Hiya, when I went to my gp about it I made sure I did some research so I could ask him what he thought and he said he knew all about side effects, to say I was shocked was an under-statement, and to add insult to injury he still wanted to give me my fourth injection and I refused, I then went to see my gynae/consultant a few days later and he said the injection obviously didn't suit me and it only suits around 20% of women and was also aware of the effects.....that said it may suit you pet, just not for me.....Best of luck with it all and if you ever want to ask a question you can pm me any-time, Best of luck and hope your feeling ok :) xx

chezzle01 profile image
chezzle01

Yes Its ruined mine. Come to see me at Lupron Warriors on Facebook see the evidence for yourself my name is Cheryl Newton I'm disabled because of it and I'm running an awareness campaign to help others stop ruining their lives too.

Xxx

Sjma profile image
Sjma

I had 2 doses of prostap then 2, 3 monthly ones. I noticed last October I was really achy and stiff in joints and I had my last dose April 2020. I had my hysterectomy in May this year and I'm still stiff in joints. Being back and shoulders and hips knees. Looks like prostap isn't really a good thing to be on. I can be sat on settee for ten minutes then get up and its terrible. So yes I am the same as you.

katiehopeful81 profile image
katiehopeful81

Can anyone tell me the mechanism by which Prostrap causes the joint pain? X

Eggcustard profile image
Eggcustard in reply to katiehopeful81

Sorry but I have absolutely no idea. It’s shown as a side effect on the leaflet possibly as a menopausal effect (menopause causes joint pain)

katiehopeful81 profile image
katiehopeful81

I’m screwed then because I already have joint problems 😩

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