my husband developed swollen knees and hands with restricted movement in arms and shoulders immediately after radiotherapy. Tried lots of things but kept getting worse. GP stumped as was Onco and Prostap was stopped on Oct10th to see what was happening. referrred to Rhuematologist who after a lengthy exam said also he wasn't sure but provisionally diagnose Reactive Arthritis.
Seems body can react to radiotherapy as an assault on it and go into a strange survival state and it was decided that this was it. Steroids given and knees drained and steroid injected to good effect . effect lasted six weeks but gave him a rest and we managed a few days away but steadily returning. Seeing Onco on Dec 18th for assessment so hoping to hear something positive.
Just wondering has anyone else had this and what happened long term Lyn
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my husband developed swollen knees and hands with restricted movement in arms and shoulders immediately after radiotherapy. Tried lots of things but kept getting worse. GP stumped as was Onco and Prostap was stopped on Oct10th to see what was happening. referrred to Rhuematologist who after a lengthy exam said also he wasn't sure but provisionally diagnose Reactive Arthritis.
Seems body can react to radiotherapy as an assault on it and go into a strange survival state and it was decided that this was it. Steroids given and knees drained and steroid injected to good effect . effect lasted six weeks but gave him a rest and we managed a few days away but steadily returning. Seeing Onco on Dec 18th for assessment so hoping to hear something positive.
Just wondering has anyone else had this and what happened long term Lyn
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Hello lyn
Just to say I hope your husband gets a good assessment from his Onco.
The body is a weird and wonderful thing isn't it and has a mind of its own.
I hope you get replies to your question as I too would be interested in the answer
Good luck and best wishes for a positive outcome
Sandra
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Hi Lyn, I haven't experienced this particular issue after radiotherapy but I have suffered from psoriatic arthritis since my early 20's.
Arthritis is caused by an auto immune response, mine started as psoriasis followed by psoriatic arthritis 3 years later. This occurred after a very stressful event in my life. It is an opportunistic disease so if the body is under par due to stress, infection or trauma it can trigger arthritis.
I would think that your husband's body is reacting to an accumulation of events causing this swelling and pain.
Have the doctors conducted any blood tests looking for arthritis markers?
Non steroidal anti inflammatory drugs can help bring the pain and swelling down too but should only be taken under medical supervision as they can have difficult side effects.
I am on a drug called Salazopyrin plus Naproxen when I need it. The Salazopyrin works long term on reducing joint damage and is a second line arthritis drug.
I hope this is of some help. Best wishes, Ian.
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Hi Ian loads of bloods done with no real answer in any of them. No one really knows exactly what it is but your reason sounds right as diagnosis came out of the blue. T3a with no symptoms. Huge shock.
tried Naproxyn but it shot his bp up to 220/78 and ended up in stroke ward so can't have them again. avoided stroke but very scary.
He's had a terrible year one way and another and maybe its an accumulation of events topped off with the stronger radiotherapy and Prostap that have put the body in shock. everything has happened since last Christmas so I am hoping we can have a better one this year.
Thanks for your thoughts Lyn
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HI Ian thank you so much for your kind wishes and information. at surgery this morning he was told that diabetes has jumped a lot and we have often wondered if Prostap can start it . also steroids may have caused jump. Diabetes was diagnosed just before radiotherapy and may also have a bearing on the arthritis condition.
its a real mixture but you are right , getting low and tired does make pain worse.
seeing doctor on Monday about diabetic numbers. fingers crossed .
Hope your arthritis settles soon as its a rotten thing.
again thank you Lyn
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Glad you got that sorted anyway Lyn, and just in time for Christmas.
Better feeling health in the New Year eh.
Best Wishes for a Merry Christmas
Sandra
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Hi Lyn - My hospital doesnt usually test PSA after hormone therapy prior to radiotherapy but I asked for a test to see exactly what the hormone therapy had done for me - in 5 months of nothing but hormone treatment (Prostap) which I was having prior to my radiotherapy my PSA went from 30 to 1 - thats pretty damn effective !
You can take "holidays" from hormone therapy but 10% usefulness seems very low so I think you need to clarify the word "protection" as it relates to your case. Blanket percentage numbers can be misleading - better to get it explained in more detail by your oncologist.
Tony
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Hello lyn
Just to say I hope your husband gets a good assessment from his Onco.
The body is a weird and wonderful thing isn't it and has a mind of its own.
I hope you get replies to your question as I too would be interested in the answer
Good luck and best wishes for a positive outcome
Sandra
*****
We can't control the winds - but we can adjust our sails |
User
Hi Lyn, I haven't experienced this particular issue after radiotherapy but I have suffered from psoriatic arthritis since my early 20's.
Arthritis is caused by an auto immune response, mine started as psoriasis followed by psoriatic arthritis 3 years later. This occurred after a very stressful event in my life. It is an opportunistic disease so if the body is under par due to stress, infection or trauma it can trigger arthritis.
I would think that your husband's body is reacting to an accumulation of events causing this swelling and pain.
Have the doctors conducted any blood tests looking for arthritis markers?
Non steroidal anti inflammatory drugs can help bring the pain and swelling down too but should only be taken under medical supervision as they can have difficult side effects.
I am on a drug called Salazopyrin plus Naproxen when I need it. The Salazopyrin works long term on reducing joint damage and is a second line arthritis drug.
I hope this is of some help. Best wishes, Ian.
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User
Hi Ian loads of bloods done with no real answer in any of them. No one really knows exactly what it is but your reason sounds right as diagnosis came out of the blue. T3a with no symptoms. Huge shock.
tried Naproxyn but it shot his bp up to 220/78 and ended up in stroke ward so can't have them again. avoided stroke but very scary.
He's had a terrible year one way and another and maybe its an accumulation of events topped off with the stronger radiotherapy and Prostap that have put the body in shock. everything has happened since last Christmas so I am hoping we can have a better one this year.
Thanks for your thoughts Lyn
The only thing you know is you never know,so,keep trying |
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Hi Lyn, It's a lot to deal with and I now restrict Naproxen as much as possible because of it's cardiac associated risks, not to mention the stomach risks too.
I finished salvage radiotherapy at the end of April and my arthritis is flared up badly just now because I have allowed myself to get low and tired. It is a very opportunistic disease. I am still taking the PROSTAP at this moment and am not sure it will be behind the flare up.
I hope your husband gets things under control again soon.
I totally understand your shock, coming anywhere near to terms with a cancer diagnosis is really difficult to say the least.
I too was staged at T3a having been led to believe it was T2b or T2c but the cancer had broken through the prostate capsule.
All the best to you both, Ian.
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HI Ian thank you so much for your kind wishes and information. at surgery this morning he was told that diabetes has jumped a lot and we have often wondered if Prostap can start it . also steroids may have caused jump. Diabetes was diagnosed just before radiotherapy and may also have a bearing on the arthritis condition.
its a real mixture but you are right , getting low and tired does make pain worse.
seeing doctor on Monday about diabetic numbers. fingers crossed .
Hope your arthritis settles soon as its a rotten thing.
again thank you Lyn
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Saw Onco last Monday and he said that arthritis and diabetes very likely caused by treatment, So, giving G 6 months off to get these conditions under control as PSA undetectable now 6 months post radiotherapy.
He still can't drive or do that much but its heading in the right direction and this year will be one of recovery.
To have physio soon so a merrier Christmas than last time when he'd just been diagnosed.
all best wishes to all on site and lets keep on keeping on.
Lyn x
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Glad you got that sorted anyway Lyn, and just in time for Christmas.
Better feeling health in the New Year eh.
Best Wishes for a Merry Christmas
Sandra
We can't control the winds - but we can adjust our sails |
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In talking to Cancer nurse I asked if there was any risk in G being taken off HT while other conditions being controlled she told me not to worry as HT only gives 10% protection anyway.
Is this true?? I thought it was really strong and would stop any spread.
rather worried about this information. Asked her to repeat in case I'd picked it up wrong but 10% seems to be right
Any advice/information really appreciated
Lyn
The only thing you know is you never know,so,keep trying |
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Hi Lyn - My hospital doesnt usually test PSA after hormone therapy prior to radiotherapy but I asked for a test to see exactly what the hormone therapy had done for me - in 5 months of nothing but hormone treatment (Prostap) which I was having prior to my radiotherapy my PSA went from 30 to 1 - thats pretty damn effective !
You can take "holidays" from hormone therapy but 10% usefulness seems very low so I think you need to clarify the word "protection" as it relates to your case. Blanket percentage numbers can be misleading - better to get it explained in more detail by your oncologist.
Tony
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HI Folks Just looking for some info. G has been off HT since Oct 10th now and body hair is growing back quickly which makes me think his testosterone is returning now. He's really pleased about this.
Does that give the tumour a chance to recover from RT and start spreading again.
I think I've seen that it dosent but any information appreciated
Lyn
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Sorry but another question, G has now had a ulcer come on his leg and it has a fungal infection in it. Dr said it could be result of radiotherapy. Is this likely to be correct. He's not really well at present,very tired and still up a dozen times a night so very run down.
Also diabetes and arthritis dont help. getting him out every afternoon possible for short walk and making sure he's eating very healthy but feel its all a bit uphill at present. appetite comes and goes.
Any thoughts welcome as can't think of any thing else I should be doing to help him.
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Hi Lyn, sorry G is having all these problems. Where on his leg is the ulcer?
Ian
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Lyn, very sorry to read that. Unless the ulcer is in his groin it seems a bit far fetched to link to the RT. Sounds to me as though G has become pretty run down and needs to be nursed back to full fitness with gentle exercise and a good balanced diet plus the magic ingredient TLC which I'm sure he's getting in spades. A lot of patience needed, I'm sure, but with your help, I hope he picks up soon.
AC
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Hi Lyn, I agree with AC hence my question about where the ulcer was. I was given VMAT IMRT last March/April for recurrent Prostate cancer and was told by my radiologists that skin problems were very unlikely as the radiation is focused deep below the skin.
Hope G feels better soon, Ian.
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Lyn
I am not medically qualified. My OH's elderly uncle had tried all sorts to cure his ongoing leg ulcers he finally found relief by using aloe vera gel.As always you might want to run it past your medical team.
Thanks Chris
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HI ALL, ulcer is just above his left ankle on the inner side. I think its diabetes but dont know. So many opinions.Lots of TLC available and will keep up gentle exsecise and healthy diet. He's had a bad time last year and we are really hoping this year is going to be better.
Fingers crossed and thanks for your help
Lyn
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