I was given the first injection of my 3 month poison on the 4th November 2018 along with tibolone for side effects. The first 2 months were absolutely fine a few minor side effects like flushes etc and I thought what a doddle!! Well on the 11th January 2019 the nightmare began. Sudden muscle weakness and horrific joint pain general feeling of being unwell and cognitive and coordination problems. At times I’ve needed help to get to the toilet etc .... The pain moves around my body as if whatever is causing the problem is looking for a new joint to target 🎯 the joints affect have been wrists, knees, hips inner and outer, front of feet, front of hands, neck, collar bone area. I’ve had swelling in the knees, wrists and hands. I have constant pain and weakness but when it strikes a joint initially the pain is so severe I feel delirious!! 30/500 cocodamol and 400 ibuprofen do not touch it !! No one knows what to do basically... the consultant had been no use whatsoever it’s been messages going back and forward from her secretary . I’ve been in touch with the pharmaceutical company who are also not much use and all they offered me was the side effect leaflet which I already have .. I asked them how long the symptoms would last but they said they did not have that information, which I think is a lie !! Anyway they have asked for permission to access my medical records to monitor my symptoms which I have granted. My GP has been very supportive, but in a nutshell she has no experience of these type of drugs and can only treat me for the symptoms I present to her. My bloods say my ESR levels are raised, which really just confirms that I have inflammation throughout my body which unfortunately I’m already well aware of!! She’s going to check the blood again in 2 weeks and if there is no improvement I have to be referred to the Rheumatology clinic at the hospital.. oh I forgot to mention the consultant said that although theses are symptoms associated with this drug she wouldn’t expect raised ESR blood tests and she thinks something else might be going on !! I’m distraught as this is my 4th week off work and I had none of these symptoms beforehand! If anyone had experienced any similar symptoms can you please contact me. Thanks so much x
Decapeptyl Nightmare: I was given the first... - Endometriosis UK
Decapeptyl Nightmare
Sorry I meant to say my treatment was suppose to shrink a large 10cm fibroid and needless to say I will not be having the second injection which was due 4th February.
Hi wendy_mac, so sorry you are feeling so rough at the moment.
Has your GP contacted Decapeptyl's manufacturer? I had a very similar experience with another brand of GnRH Analogue/Agonist and contacted that drug's manufacturer's pharmaceutical advisors. In my case they were actually really helpful, but they also explained that under UK Law they are not currently allowed to provide detailed medical advice about their drug's side effects to members of the general public - they are only allowed to refer them to the same information provided in the published patient information leaflets. However, they are allowed to provide medical professionals with far more detailed information and advice. If your GP is supportive then it may be that if they contact Decapeptyl's manufacturer's pharmaceutical advisors with you also giving those advisors permission to discuss your case with your GP then they might be able to offer more help and assistance...
Best of luck, I really hope you get the support you need soon.
x X x
Hi thanks so much for your reply. My GP hasn’t been in contact with them but I have granted them permission to access my medical records from my GP. I will ask them on Wednesday at my next appointment... can I ask for more information about your case ... how long did your recovery take ? What were your symptoms? Thanks so much x
Hello again,
I suffered severe joint and muscle pain, drop in bone density, severe fatigue, cardiovascular symptoms, sleep problems, and mood changes (among others). However, I was on it for several years with those side effects sadly escalating over time because, like you, I found it quite hard initially to secure advice from anyone familiar with GnRH Analogue/Agonist side effects within my area's NHS Healthcare Trust. Because I was on this kind of drug for such a long time it took a lot longer for the side effects to improve once I stopped taking it and some of the damage caused by those side effects, although improved, still remains. I still hope that my general health improve yet further over time, but it is sadly just a matter of waiting to see if that is the case. However, as I say, I was on it for a lot, lot longer than the licensed 6-months.
Given the particular side effects you are suffering it sounds as though your Specialist / GP should be carefully monitoring your bone density - has anyone carried out a DEXA bone density test both to get a baseline reading and to monitor whether your bone density is dropping over time?
Also, have you read the manufacturer's Summary of Product Characteristics leaflet (published with their Patient Information leaflet on Medicines.org.uk)? This is slightly more detailed and, although accessible to all, is aimed at providing GPs and other medical professionals with guidance on how to monitor/manage side effects. You can download it here:
medicines.org.uk/emc/produc...
If you've only previously been able to access the basic Patient Information leaflet then maybe this might be of more help, although it still doesn't provide the type of in-depth guidance that a medical professional should be able to access from the manufacturer's pharmaceutical advisors. Also, the UK has a "Yellow Card Scheme" where patients and medical professionals can report side effects suffered while undergoing medical treatment. As this provides an official notification of side effects suffered it can end up being taken more seriously - it may be worth asking your GP to log your side effects with this scheme:
Best of luck again,
x Annette x
Hi Annette.. thanks for your reply I’m so sorry to hear you have suffered so badly I really hope your symptoms improve as well I have already raised the yellow card and I will ask about the bone scan as I do have a family history of osteoporosis , which might I add add was not asked about before the injection!! Or I would have told the consultant about it!!! Anyway thanks so much for taking the time to respond to me. Can I ask how long it’s been since you stopped your treatment ?
Wendy x
Hi again wendy,
A family history of osteoporosis is listed within the 4.4 "Special warnings and precautions for use" section of the Decapeptyl Summary of Product Characteristics as a risk factor for reduced bone density and associated side effects so I would recommend that you and your GP both get in touch with your prescribing Specialist asap to make sure that they implement the proper monitoring protocols and organise a bone density scan. Again - if your Specialist remains unhelpful or seems unfamiliar with this type of established Decapeptyl side effect then I would quote the relevant section of the manufacturer's advice to them. It might be worth contacting them via email (you should be able to google their NHS email address) so that you have a written record of reporting this particular side effect.
I stopped GnRH Analogue/Agonist treatment three years ago, but I was on it for a very long time - several years - so my experience isn't really a very good guide for how long side effects take to improve once you stop a shorter course. Hopefully, after a three month course, the manufacturer's advice that the drug should be out of your system within 6-10 weeks should hold true and fingers-crossed you will start to see an improvement in your side effects before too long. Do you take a vitamin D supplement - you need good vitamin D levels to maintain bone density? It might be worth asking you GP about any personal steps you can take in order to optimise your recovery - protein and calcium rich diet in addition to the vitamin D etc. It's not going to make a dramatic difference, but sometimes every little bit of improvement helps...
x X x
Thanks so much for your help Annette xx
Hi Annette, sorry to bother you again ... can I ask one more question? Did you have raised ESR levels which indicate inflammation in the body at the time you were experiencing joint and muscle pain. My GP did blood tests and my ESR levels were high. Thanks again x
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