Has anyone had a bad reaction to Oramorph?

[Ruffabug]

Reading the thread about using opioids for RLS, I wonder if anyone has tried Oramorph? As I have stage 4 cancer, when I had some bad pain I was prescribed this liquid medicine but found that it made my RLS ten times worse. It stopped the pain a treat and I only took 2.5 mls ( a tiny amount) but my legs went berserk for about an hour.

I am now getting breakthrough symptoms of RLS regularly while on Ropinerole 4mg per day, plus 800 mg Gabapentin, all taken at bedtime. It may be a reaction to the chemo I am now on as it started when the chemo started. I only take the anti nausea drugs recommended on here. I can’t face coming off Ropinerole. I will see a new Neurologist locally next week and if he doesn’t fully understand this condition I will try to get a phone call with Prof Walker. I want to know if other opioids would have the same bad effect as Oramorph or are they different?

[Jumpey]

I'm so sorry you have cancer to deal with as well as having RLS. I haven't taken Ropinerole so can't advise joj on

[Jumpey]

I'm so sorry you are having to deal with cancer as well as RLS. Huge good luck with your treatment and I wish you peace and healing.I take oramorph for RLS. So it helps me. But we all react differently to drugs so trust your instinct about it. Ask your doctor for a different opioid. You may not react in the same way. I know that tramadol works on different receptors for example.

I think you're likely to be augmenting on the ropinerole because that is a high dose. Others will need to advise you about that because I've not experienced this.

You could try emailing Dr.Buchfuhrer about the effect of your chemo drugs on RLS. He is Always available for advice.

Take good care.x

[Ruffabug in reply to Jumpey]

Thank you Jumpey!

[Joolsg]

I am so sorry you're having to deal with stage 4 cancer and RLS.I suspect you are going through augmentation on such a high dose if Ropinirole. Over 80% will experience worsening of RLS after 10 years on this drug. I suspect rates are 100% because most patients don't report vis the Yellow Card Scheme. I agree that you shouldn't consider going through withdrawal as it is too traumatic and it would be better if you tried to alleviate it by splitting the dose and raising brain iron.

The reaction to oramorph is unusual.

Before you see Prof. Walker, you could try splitting the dose of Ropinirole and take 2mg around 6/7pm and 2mg before bed. That can delay augmentation.

Also, your iron levels will probably be low because of the chemo and the disruption to gut absorption. Consider taking a good probiotic like VSL or Symprove.

Ask your oncologist for full panel bloods and discuss iron supplementation or an IV infusion. It may alleviate the augmentation BUT you need to check its effects on your chemo and cancer.

As Jumpy advises, we all react differently to meds so another opioid may work for you at some stage, if needed.

Take care. Wishing you strength.

[Ruffabug in reply to Joolsg]

thank you so much for your kind and considered reply. I will bear it all in mind.

[Typicallygaslit]

I’m sorry to hear about the cancer. I am not augmenting, and I haven’t had cancer, but I had a traumatic injury during surgery a few years back and many incidents of sepsis that were treated with strong antibiotics. I sometimes wonder if that made me more sensitive to medications and aggravated other neuropathic issues I have. When I finally managed to get a GP to try me on opioids for RLS, I found I don’t tolerate them. Buprenorphine makes me extremely depressed. I then tried Oramorph, and it made RLS worse. I seem to be extremely sensitive to increases in serotonin, and I think this aggravates my RLS. Unfortunately it would seem that the opioids both counteract the RLS and increase it by increasing serotonin. Tramadol is also very bad in this respect. I think a few of us have this issue.

[Ruffabug in reply to Typicallygaslit]

Thank you. I am very sorry to hear about your bad experience but find it interesting about the opioids especially Oramorph. What we have to go through in our lives!

[Typicallygaslit in reply to Ruffabug]

I’ve tried to find data but haven’t found anything substantial, and am therefore struggling to communicate my problems to my doctor. Here’s one article I found about opioids and serotonin if this makes any sense to you, however morphine isn’t really ‘supposed’ to cause problems. I nevertheless suspect that it does (unless it’s some other even more obscure issue) bjanaesthesia.org.uk/articl...