Has any one heard of Rinio Hump? i was seen by the doctor this afternoon about my sicknote and before i got the chance to ask if i can be phased back to work she signed me off . until 30th September , because i carnt see my back my sister came with me as she said i have a hump at base of neck/top of back my G/P said yes its Rinio Hump.
I spoke to the hospital about a follow up Appointment as ive not had one since the temporal biopsy to been told the next free appointment is Dec, i had an arugument with them saying thats not good enough and i will go to another hospital so then they gave me appoinment for Monday 17th (strange that ).
Steph
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Hi Steph, yes I have a "hump" on the nape of my neck/back. I don't like wearing clothes without collars asI am self conscious about it. I'm not sure if it's from taking the steroids as when I asked my GP she just smiled and said not to worry.
i know wot you mean thats not want we want to here , i dont know if yours ahes mine does, i have two disks in my neck that have been popping out for some time that was shown on an MRI scan i had for something else so i put the pain down to that because you carnt see the back of your own neck its not easy to see a hump , my sister said about it after seeing my G/P i went home and one of my sons was there and he said he can realy notice it so that was me in floods of tears . we are due to go on holiday 3rd October and im strugling any way with my weight having increased by two and half stone since starting the steroids and now this hump , My sister is a great support to me and takes me to town or shopping which takes us a while as i carnt walk far without being in alot of pain with my hips and legs and now people staring , im very conscious . sorry for going on Steph
Hi Steph,
Well done. I feel that now you are getting really angry, and are fighting back. Sometimes, with the medical profession, you just have to do that. I'm very suprised that your GP did not put your mind at rest about the so called rhino hump. It will not last for the rest of your life, it's just fat, and is put there by pred like the rest of the fat you are getting, in the wrong places, and do not like.
Please believe me, all the excess fat will go when you are down to the lower doses of pred. My lovely hump has almost gone as I'm now on 7mg.
I know that you are on hols soon and are prob concerned about how you will look, but try not to worry. Your sight is so important, much more than an little lump on you back. The steroids will save your sight! Try to get clothes that will cover it if it really bothers you, like floaty kaftans which are cool and protect you from the sun. In the evenings you could wear a fine shawl around your shoulders, over your skimpy tops. Will look quite glamorous.
Steph, I do know how you feel. As if everyone is looking at you. It took my partner to put me right. He said, stop looking at them, it's you who are drawing attention to yourself. He was right. You notice and so do your family, but other people don't.
To tell you the truth, I'm now in tears. I'm going back into the past when I felt just like you. I hated this bloody drug with a vengence, but it is the only drug that will get you back to health.
I'm so glad you are going back to the hospital soon. Remember-keep that fighting spirit.
You know it's there so you think people can see it but they are honestly not looking at it Steph. You can adapt your clothing such as collars, like I do, or I have roughly 30 scarves for every occasion. I put on nearly 3 stone over the last 4 years through up and down high doses of pred but I am now down to 5mg and have lost quite a bit and have gone down three dress sizes. I saw an old friend tonight and she couldn't believe how much weight I had lost.
It sounds like you have good supportive sister and as Pats has said your sight is so important it is worth saving. I know it's not easy when you are in that dark place but Steph concentrate on getting better and don't worry about the " hump" as that will go.
Look forward to your holiday and use it to recharge your batteries so that you are ready to fight this with a passion.
Yes Steph, it is one of the side effects of steroids, but I've always heard it described as the 'camel' hump! Neither is a very nice description, but I have it along with lovely (not) fat rosy cheeks and round face, fat tummy etc. Strangely enough, I thought it would be the cosmetic side effects that would bother me most, but they don't, and they will go eventually. The other problems bother me far more - sky high cholesterol, osteopenia, gastric problems, viral warts, etc. I hate the steroids with a passion, but when ever it gets me down, I try to remind myself that without them, I was completely immobile at 58 and had a far higher risk of losing my sight. Sadly, the steroids are the lesser of 2 evils. I don't know at what point the weight/hump/fat face will start to subside, people seem to vary a lot with that too. 9 months on my 'journey' and I'm on 13 mg, so time will tell.
guys, all of ya;ll are saying the buffalo hump goes away. I have been off steroids for ten years and that fat hump isn't going anywhere and I am just average weight; not overweight. It looks very out of proportion. I look like a dang linebacker. They said it's permanent many times and i would need to lipo the thing!! UGH. god bless
Sorry I've been quite for few days been really fed up any way , I've seen arthritis doc today he is booking me a head scan got wait for that , reducing steroids staring tomorrow to see wot happens , got have blood test every 1-2 weeks to check esr levels. I go and see the eye doc again tomorrow let's see wot he says to me there is no improvement left eye vision not right , and driving when it's dark is not good so I won't be out after dark Steph
Dear Steph,
My thoughts are with you. I'm sure things will improve. Of course you're fed up. We all would be, but the cosmetic effects of pred really diminish after 10mg, I promise. They will go so don't lose heart. I've had the lot! I'm now down to 7mg and I'm only about 5 pounds over weight and all the other effects have virtually gone too.
hi pats seen the eye doc today my eye is no better so back on steroideye drops but for 3mths this time then see him again.
seen nurse today wieght 12st so lost 6lb since 10th sept, must be the plums im eating HaHa, blood pressure 146over 90 so thats not to bad.
dont know if i said but since i had the biopsy i carnt hear properly in left ear and slight numness left side of lip.
how are you?
steph
Hi Steph,
So glad for you. Losing weight eh! Well done.
When they did the biopsy they might have damaged a nerve. Talk to your GP about it. I'm sure it won't be permanent. But get him to check it out and if he seems at all uncertain, he should refer you to, yes you've guessed it.
I'm doing OK I suppose, but I still have to pace myself. I get burn out a lot.
Try not to worry. Have you got kitted out for you hols?
Hope the extra drops do their job. Don't lose heart.
Yes kitted out for hols my eldest son gave my sister money to take me and get some bits bless him,
since my steroids have been reduced to 30mg ive been in alot more pain , this morning it took me 10 mins to get out of bed and then i couldnt walk around without holding on to something that lasted about one hour. my appointment came through for MRI ive got it Sun 30th in the evening.
steph
Hi Steph,
So glad you're sorted for you hols. At least you're having your scan soon. Your 30mg of pred should soon have the pain under control.
I'm not feeling good at the present. After over 2 weeks on 7mg I still feel like death warmed up.
hi pat sorry youin alot of pain again, they think the mri will come back clear they only doing my head so i dont know where i go from there , im concerned as when im on hol i will be down to nearly no preg as he is stopping them to to see wot happens i told him im going away but didnt seam bothered.!
let me know how you are felling take care Steph xxxxxx
steph,
What do you mean when you say he's stopping them? If you are on 30mg, it will take months to get off them. You have to be weaned off them slowly whether you have PMR or not. Once we have been on pred for more than a few weeks our adrenals go to sleep. The result of coming off the drug too quickly might be adrenal failure.
I can hardly believe your GP is stopping your dose knowing you are going abroad. He should be upping the dose a bit to get you through the stress of it all.
Steph, you really should see another doctor. Isn't there one at your local practice?
Hi Pats its not my G/P its the hospital Arithris doctor , ive got MRI scan but that only on my head and he thinks that will be clear so i asked him about a body scan cos i said there is something wrong some where but he started to say about cost then changed it to they dont do them , soory Pat what is Adrenals ? like i said the pain and not being able to walk with out holding on to something for about one hour first thing in morn i feel like 84 yrs old not 54yr.
steph
Hi Steph, look back at your last question for my answer.
As I 've said, your GP needs to see you about the pain and the dropsin steroids.
im going to phone the doctors on monday , the g/p that has breen dealing me is on leave but all the others are very good im gping to see if they will change the remey doc to a different hospital , as im concerned aswell , thankyou you ffor all you help and advice .You are not so good sorry for adding to your stress when your feeling so roten.
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