Thank you for the replies to my first post about my Dad.On Monday my parents saw a GP and he was examined. The GP felt that may be my Dad's worsening symptoms were caused or contributed to by the Prednisone. He said that he would contact the consultant. The consultant at the John Radcliffe Oxford has a clinic on Wednesdays. So far my Mum hasn't heard anything. She rang the hospitol and spoke to an epilepsy nurse. Looking at my Dad's notes he said it didn't seem as though the GP had been in contact as yet.
My Mum is going to ring the GP again in the morning. My Mum is 85 yrs and understandably is exhausted and finding it harder to cope in these last weeks. My Dad today tried to dismantle the phone. He has slept a lot today.
Is it possible that symptoms of Autoimmune encephalitis can get worse again even though it seems that the prednisone is controlling the seizures my Dad was having. My Dad's skin condition has deteriorated which the GP says is due to the prednisone.
Since my Dad's diagnosis my parents have been given no information on autoimmune Encephalitis and nothing on the effects of prednisone. I am also feeling that considering their age surely there should be more in the way of support from the hospitol /GP as to their well being and how they are coping?
Thank you any advice is appreciated
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Mouseling
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From my experience this condition is way too rare for GPs to be of much help. Your Dad probably needs to be under the care of a more specialised neurologist. The JR hospital is well-known. I'd ask your GP for a referral there. I've taken Prednisolone but didn't encounter the same side-effects. Everyone reacts differently.
I feel for you. I’ve been through this. You need to be seen at John Radcliffe. My GP (eventually, after a long fight with local services who, it can be said, did not have a clue). Sent a referral. The e mail they used for the referral was:
neuroscience.electiveaccess@nhs.net
This was 2 years ago so I don’t know if this is still correct. Ask the GP to make sure they make the referral.
You will probably need to keep pushing, depending upon the knowledge locally.
The neurologist at our local hospital said she thought the problem was ‘behavioural’. Yeah, right…. I did all the research and got the referral to Oxford.
There are other therapies which can be tried. Ask questions, get answers. Don’t just leave it. It may not get done.
Me again. Prednisolone does affect the skin. It gets very thin and tears easily. Keep his arms covered. It can also cause weight gain and bloating/swelling. There’s nothing can be done, he needs the medication.
I was fortunate to be assigned a social worker but only after there was a serious deterioration in mental health. This was before he was diagnosed though. She couldn’t do anything but was a sympathetic ear.
After diagnosis there wasn’t much support available to be honest. The condition is very rare. I got support from the Oxford neurology group. If I e mailed with a problem they always responded.
Social care services are so stretched these days it’s left to us to manage as best we can. Ask your GP if there’s anything available.
I am so sorry your family is going through this. It is a difficult situation. I am a caregiver for my husband. He was diagnosed with NMDA Receptor Encephalitis in August 2020.
It has been a long journey and continues.
Once my husband was diagnosed in the hospital, besides prednisone they also tried IVIG and Plasma exchange. He would get better then start to go downhill again. Once they released him we were told he would need a neurologist that had experience with autoimmune encephalitis or MS. Fortunately we live in a city that had a great medical center.
Still once he was released even through he was on 40mg of prednisone, he started going downhill and the doctor prescribed an IV of prednisone to calm the antibodies until we could insurance approval for Ritiximab. He was on IV of Ritiximab and oral meds of Cellcept. He had 2 or 3 infusions of Ritiximab and then it started to stop working so we tried Cytoxin. He had 5 infusions.
Now he is back on Cellcept and 2.5 MG of prednisone. The doctor has to wean him off slowly from the prednisone.
I tell you all this because some meds may work for a while and then you will need to try something else to calm the antibodies.
My husband maybe had 1 seizure at the very very beginning. He symptoms are usually lots of confusion and sometimes hallucinations and eye sight problems.
You have not mentioned which autoimmune disease he has. Has your dad have any MRI done lately? My husband does have permanent brain injury from this disease so sometimes it's very hard for me to tell if it's the disease or his brain injury causing the problem. Anytime I was unsure if the disease was active, I would ask the doctor for a MRI. This is they only way they can really tell what's going on.
I hope your and your mother can get some help. This disease is very hard on the whole family. I hope my experience has help you.
Also, his doctor said my husband was the first patient he ever had to prescribe Cytoxan to. I let you know this so you will understand, everyone journey is different.
The encephalitis recovery can be a rollercoaster. After I was released from hospital, my body suddenly rejected the epilepsy drug it had previously accepted. My GP thought my symptoms were a simple allergy, but my husband recognised that I was becoming seriously ill . He had to persist with multiple phone calls to get a specialist review . The specialist changed my meds, and that was a positive turning point in my recovery.
I know it’s hard, but keep on ringing your GP and the hospital to demand an appointment. Prednisone can cause skin tears, but if your Dad is being prescribed it for epilepsy seizures rather than brain inflammation, the neurologist can find an alternative epilepsy med .
I really do feel for you right now because the roller coaster journey that you , your poor dad and family are all going through is something I can relate to .
My mum was diagnosed with autoimmune encephalitis in April 2022 . She didn’t come home until June 2023 … it really is such a long process of recovery and of course everybody is different . I always questioned whether the medication she was on was causing her behaviour to be so irrational but I generally do now believe that it was the encephalitis . It can take years for the recovery . My mum spent 8 months in a neuro psychiatric recovery house . That was where she finally got the help and support she needed to be able to come home again . My dad would not have coped otherwise - that’s how bad she eas . She couldn’t sit still , was extremely anxious and was not sleeping .
I am thankful every single day that now she is a completely different person . She still struggles with feelings but she has adapted well and able to do ‘ normal ‘ things again . She did lose a lot of her hair which I think was due to prolonged use of the steroids . She is now off a lot of her medications but now takes anti depressants which seems to be helping a great deal .
I hope you get more answers . I know this is an incredibly difficult time but have faith .. it really does take as long as it takes but improvements will be made and continue to improve over time . You are not alone in this
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