Painkillers

[AncientMariner]

Due to previous Radio/Chemo on the neck area I have developed necrotic breakdown of the bone tissue in the right side of my jaw and when I lapse in the constant Gruel I consume it can flare up and become so painful I cannot sleep or eat. The situation is complicated by GCA and in the past Co-codamol/ Solpediene (not taken together) have managed it but not this time, nothing was controlling it. My Maxo-facial Consultant does not want to remove any molars or do any root canal work as he feels it will just aggravate the condition and I see his point but this time I needed to bang up my Hydrocortisone 15 mg to get it tamed. It is now subsiding and as I am trying to stop Prednisolone (My Ophthalmologist want me off it and on Hydrocortisone s he says it is less toxic long term) I felt it best to get the inflammation down that way. Has anyone had any experience of this and any good painkilling approaches as I don't want to keep messing around with steroids to deal with this.

[MrsNails]

Hi AM - l really think you need a referral to a Pain Management Specialist (often they are Anaesthetists) as you may need more than one type of medication to improve the situation for you. Has your Specialist not suggested this?

I do hope you can get a satisfactory solution quickly as there is nothing more debilitating that constant pain.

Kind Regards

MrsN

[AncientMariner in reply to MrsNails]

Thankyou, I will mention this to him as clearly it is too great an Herculean intellectual leap for him to have suggested it, meanwhile more gruel.

[MrsNails in reply to AncientMariner]

I saw a PMS years ago for my Shoulder & it was well worth it - l knew him anyway (as l worked in the same hospital) & it’s a whole different way of managing the pain - taking at regular times & just better management. For Example - instead of using Co-Codamol, he recommended taking the Codeine separately from the paracetamol then you could easily add more Codeine if required…..

He was the chap who put me on Amitriptyline at night (after explaining how it worked)

I hope you can get a referral 🙏🏼

[Rugger]

Thinking of you AM, as we have a good friend who has had similar therapies. He lives on a 'sloppy' diet and loves to visit as I always make him a nourishing hot chocolate drink!

I'm sorry to read about your pain and agree with MrsNails about referral to a pain clinic.

[PMRpro Ambassador]

I appreciate the feeling on the part of the ophthalmologist that pred long term is "toxic" - but if pred is the best option and you need it anyway, seems stupid to add more in the form of HC.

But definitely get a referral to Pain Management - their attitude to the use of most things is very different from that of the acute doctors.

[AncientMariner in reply to PMRpro]

Thankyou, I am not sure what my Ophthalmitis's entire thinking is on this. I am sure it is well intentioned and I use their words when describing the use of Hydrocortisone as a less "toxic" steroidal treatment long term than Prednisolone. It is certainly not my intention to alarm any other sufferers who have used this drug for many years to some benefit I would imagine but to describe my own quite complex case. The increasing worry for me is that the next thing they want to reduce and possibly stop is Methotrexate too and with noises being made about Tocilizumab stopping. Given the fact I have already lost sight in one eye I am a little alarmed at being left on just Hydrocortisone whilst bearing the misery of Necrosis of the jaw. The pain clinic is an excellent and must I say obvious clinical pathway that has been suggested to me here and nowhere else, frustratingly.

[PMRpro Ambassador in reply to AncientMariner]

Wonder if they have ever taken it themselves? I know several people who were persuaded to switch to HC as being better long term and had horrible side effects they'd not had with pred so switched back. And I believe the official line for adrenal insufficiency now is that either is acceptable.

Quality of life is all - and it won't do me much good in 15 years time if the present is unbearable. It IS a VERY complex case, and I would say the opthalmologist is taking too blinkered a view of pred in the context of the bigger picture. You are relatively young - you are being robbed of your 50s as I was without pred for PMR. Maybe that colours my view of pred and its long term effects - but I know my 60s have been rather better than my mid-50s were. And everything is still working fine - despite me needing well above 10mg long term. Without it life wouldn't be worth living - and I'm really not sure I could deal with it since no other pain relief works.

[Pixix]

Wow, coincidence…I’ve just posted about necrosis of the jaw as consultant dental surgeon is unwilling to remove my tooth (lots of infections in past few years). It does sound truly horrible & your story helps me…you may want to read my post, as it’s alendronic acid that has put me into a higher risk category for necrosis of the jaw. I’m also being referred to a Pain Clinic, for reasons unconnected with PMR, & agree, they are the pain specialists. Thanks for posting it has helped me, but I’m truly sorry you have it. Gentle hug for you, S x

[AncientMariner]

Thankyou for your kind words, mine is a particularly complex case and although I take Alendronic acid and have done for a few years now I believe the cause of my Necrosis was intensive radiotherapy aimed at the neck for a tonsillar tumour. This somewhat ironically has also provoked excessive bone growth on the inside of the gum that has cut into my tongue giving me and the professionals another problem to manage. I have found nothing on the management of Necrosis of the jaw caused Radio/Chemo but a fair amount on it when it involves (rarely apparently) drugs like Alendronic Acid. The pain clinic is an excellent idea and given the amount of dental appointments I have had my issues are hardly going under the radar and I find it frustrating this has not been put forward to me by them as it would certainly reduce the visits I need to make. How can I reduce my Steroids when this problem keeps flaring up and ordinary painkillers are useless in the acute stages of this? Keeping the different departments I am seeing on the same page despite shared electronic notes requires MY care co-ordination but I have to add that the information I have received from fellow sufferers on this forum has been of immense help.