Kenalog injection and trying without hydroxy now..

[Gizmok9]

Hi, just wondering how people get on with kenalog injections? I was given one before xmas. Found not a great deal of difference from it, I have reduced my tramodol intake though. It did seem Up set my bowels, bad constipation to start with. How long should it last too? Was given 80mg

Rheumy appoint reckons I should have ? Any one have this?? Or was I just expecting better?? ?? I Struggle with chest pain the most... (Have fatigue, sore joints, stiffness, photosensitive, hair loss, mouth and nose sores, headache and migraines, brain fog, skin problems,etc) Rheumy put down as no effect but suppose less pain killers is progress?? Dont think I really mentioned the less painkillers .

Rheumy reckons my bloods show more sjogens than lupus but I can't find anything about bloods that confirms this? I have positive ana, and positive ro60 abs? Anti ro.. ESR/CRP normal at mo..

I met critiria for lupus on my diagnosis, so feeling a bit in limbo again. Anyone had this or should I ignor as a bad appoint ?

I'm Trying off my hydroxy (rheumy knows ) at mo to check the benefits of it.. (Just feel I have deteriorated since I started it last year) since I've stopped, so farHeadaches/ migraine worse and the fatigue, and aches, so feeling does have its benefits, been off 2weeks, trying up to 6-8 weeks, or can go back on when want.

Also been given gabapentin after tried this to try, got a script ready...

[milkwoman]

I cannot answer the injection question but I am concerned that you have stopped taking hydroxy. That medication helps your body to fight the inflammation lupus brings and there is no benefit to not taking it. I am not sure you would experience symptoms this soon being off for only two weeks but it is possible - how long have you been on hydroxy?

I only stopped hydroxy briefly in the beginning when I was having horrible side effects to the generic. I've been on the name brand now for about 15 months. It helps me tremendously.

Take care.

[Gizmok9 in reply to milkwoman]

I was on hydroxy since april last year.., my main concern is I have seemed to have worsened since this time.. And have lost weight and I'm now feeling muscle weakness too.. I Struggle on physical things.. Was a active walker, swimmer etc.. Rheumy said best way to check if cause was stop taking And compare..

[milkwoman in reply to Gizmok9]

Ah, I guess I can understand this.

Whether lupus or Sjogrens (I actually have both - yay me) they are treated the same (meaning hydroxy would be prescribed for both).

I also used to be very active (resistance training and high intensity cardio). Was in the best shape of my life. It all became too much and I haven't worked out in 4 months to allow body to rest and heal.

For over a year I've been treated for pain in my right elbow - on my third steroid injection ( I didn't know kenalog was a steroid... Google is a wonderful thing) but surgery is most likely in my very near future since I have tendon as well as ligament damage.

A couple of thoughts:

You could have issues with the hydroxy. There are several genetic brands which all contain different filling agents. If you are sensitive to the agents you could not feel well over time and not put two and two together, especially if you have been on different generics depending upon what the pharnacy hss in stock. (Side note: if you find one you like, your endo can insist on that one generic always and specify on script).

When I stopped, my stomach issues immediately went away and I insisted on only the namebrand. I even tried several generics - eventually the side effects get to be too much.

Second, I've read the side effects list to the injection - it is possible that the injection is causing your issues, just by itself or, also, it can muck up hormone balance. So, if you are any HRT (patch, progesterone and/or estrogen cream/meds) or are on thyroid meds, you could have interference. I'm hypo and when my dosage isn't right I don't feel well.

Thirdly, how are your bloods? Vit B12, folate, Vit D, iron and ferritin? How are your thyroid hormones? Bodies like ours need to be in good balance for everything to work properly. I take all sorts of supplements and some work and others not sure. I like it when I hit upon one that works. I struggle to raise ferritin levels )for active females it should be above 60 - last check I was only around 40 even with supplementation). And just recently, I've started to not feel well on the iron sups that I had them with no issues for months. Frustrating!

We are complicated cases I'm afraid.i struggle with the "oh what's causing THIS (fill-in-the-blank) now?" all the time. So lastly, I hope you keep asking the questions and keep looking for answers. This site is AMAZING - a huge wealth of info and support. Hopefully something will spark a solution for you.

Hugs.

[noonoo52]

Hi Gizmo, I have had this injection, twice in one tendon and once in the other on my hip area, it takes two to three weeks to get total relief, but you are suppose to basically do nothing for the first two weeks for the medication to set in the area that has been injected. (Where did you have it injected) I need it done again but I have been told you can have this only three times in each hip. I also have taken Hydroxy but I have been off it for sometime, I am going back on it I think as I have not established if I feel so crap because of the menopause or because of the pain everywhere. I was told my SLE was mild, I said God help the people who are in more pain as this pain is horrific. Trouble is the Hydroxy take 12 weeks to get in your system (according to my specialist)

and depending which brand you get some taste disgusting. I am lucky as its my joints and muscles that are affected, no organ damage but I have been photosensitive since I was 14 and even the white clouds effect my eyes, you walk in a shop with sunglasses on in the winter and you get stared at, I go to the football and only take them off when it gets dark even though the flood lights give me trouble. People don't understand. I see my specialist privately and you do not get the same information on your condition as you do when you are seen under the NHS. I am now back seeing my healer as he has helped me greatly on my two recent visits, I am sticking with it as he cured my Gallstones and Carpal tunnel problems and didn't need either operation. I think my trouble is I have had pain since I was a teenager and didn't know any different and have lived with it all these years and to be told I have SLE and that is the reason for the pain. I do have an understanding GP and if it wasn't for her I wouldn't have been referred as no other GP thought to all these years. Best of Luck, x

[Gizmok9]

Hi thanks for replying 👍

I have tried couple of hydroxy makes as I started on quoinic version and couldn't cope at all with it upset stomach and felt dazzed. Went onto the zentiva and was a lot better and no ghastly taste!

I don't think the injection the prob as was like this before it.. I had it injected in by butt generally.. Was to mainly help my chest pain was my hope. I do wonder if it has helped since less painkillers now or if just had more time off recently too is it.. I run a shop so December a mad month always.

Chest prob was what led to my SLE diagnosis, always my right side... Been from chest consultant and back to rheumy with it... They Agree not asthma now but taken 7 years.. All started after I had pneumonia, been in hospital since then couple years ago to rule out blood clot, when was really struggling...

Think my history led to diagnosis and explains loads started migraine in my teens, always skin probs, really bad reactions to insect bites... And long term back problems, which have ended up with chiropractic help on that...

I have similar problems with light too, found drive ware glasses great to cope with shop lights and headlights.. They have a brown tint all the time so don't feel as daft as sunglasses indoors! Have done this too.. Also changing bulbs as I can to LEDs but do like the dark!!

Think will quiz gp on some of those bloods I know thyroid was checked last year..

[noonoo52]

Hi Gizmo,

My migraines didn't start until I was in my late 20's people,who have never had one have no idea what it is like to get it. According to my specialist it was the Glandular Fever at 14 that started this, laid dormant and reared its head on the first menopause I went through which was when they diagnosed me, I am going through the menopause again 7 years later after the big op which had its complications but my migraines has slowed down (touch wood) The injections I had was in my butt also but it was for the tendons in my hips that was painful, the funny thing is when they are very painful both my upper arms are also in pain, then I have the injection and the arm pains also disappear. When you have pain (I know you said your chest is painful) but do you have any pain actually under your butt cheeks, top of legs, I can't bend over without the pain and pull on that area.

I will look at those glasses to see if I can get them with a prescription as I am very short sited. The Hydroxy you mentioned are the ones that are foul tasting and because of the electronic prescriptions now I have to take what I am given. I take 60gms of Dihydrocodiene 4 times a day, does nothing much for the pain but gives me a well being factor. I may ask to try the others you mentioned. I do have an iron problem, can't absorb it naturally so I take Spatone which is in sachets it's a natural water and it doesn't upset my tummy, I am also taking loads of other bits but never sure if taking too many. I will try anything to get relief. (That's legal) but I am still hopeful of the healing. Keep intouch and take care, let us know how your bloods go. X

[Gizmok9]

Ta for info and I would check, you can get your hydroxy changed even on a electronic script, my gp just had to ask pharmacist how to sort by putting the brand name on script.. Gp checked only pennies in cost between brands too!!

I did take this printed for gp to read though

lupusuk.org.uk/plaquenil-av...

[noonoo52]

Hi Gizmo, well done that's the one it's a yellow tablet, you are a diamond thanks for that, wondered why I wasn't getting it. Think I have diverticulitis so will take a copy with me when I see the GP. It's just one thing after another. Take care and keep us up to date. X