PsA Loss of bone density, what will it mean for me plz?x

DebbieT

Hi again,

I'm sorry if I'm driving you nuts with all these questions :?

In '07 wen I got my definite PsA diagnosis the hip xray showed a fist sized circle, it looked like a hole on the xray. Well being a female my hips have a butterfly type of shape so if I say it was on the top part of the right wing I really hope it makes sense to you!?!Lol

PsA had obviously been active & swollen tendons & ligaments had rubbed the bone away. I'm just wondering a couple of things.

Is it normal for Psoriatic Arthritis to do damage like that not in a joint?

If it was to wear all the way thru, if thats even possible, what would they be able to do for me with it in that weird place?

Many thanks in advance.x

stickywicket

Hello debbie. We haven't 'met' before as I've been away on holiday so forgive my ignorance :oops: as I've not read any of your other posts.

I have longstanding RA which led to OA and, consequently, I have two THRs. I'm just wondering who is interpreting your x-ray, as it seems a bit odd. Have you been told you have OA in the hip? Have you had bone density tests? Who told you that the tendons and ligaments had rubbed the bone away? Sorry for all the questions, I'm just trying to understand.

DebbieT

Hi there & thank you for the response :-) Very nice to meet you.

My Rheumatologist, Dr M Piper from The Royal National Hospital for Rheumatic Diseases in Bath is who told me that I have Psoriatic Arthritis & Osteoarthritis. Tho she said it's psoriatic in most of my body which included the hole looking thinning in the hip bone.

I've never had any scans of my body just a few xrays, never even had an MRI.

It was also her that showed me the xray & pointed out the placement n said it was untreated swelling of tendons & ligaments from psoriatic arthritis that would have been the cause.

Im really grateful of the questions because it's teaching me more everytime I post, so thank you!!

My health background is I got severe plaque psoriasis on my 25th birthday, it is in my family but I'm the only one with the plaque type. In 2006, after swelling in both of my ankles, I was referred to RNHRD (The Min) & was seen early 2007, I was told I had hypermobile joints & most likely psoriatic arthritis. My next visit, soon after the 1st, was with the consultant & she had the xrays n my history on screen & I was told officially that I had some OA & Psoriatic ... That's wen I was shown & told about the hole that isn't a hole.
In 2009 I had been suffering with very bad shoulders & was diagnosed with fibromyalgia too. I've seen had cervical spondulosis (PsA based). I've got awful insomnia & cfs, depression & anxiety. Oh asthma too.

I'm 43 in 2 weeks. I've been with my husband 28 yrs this year & married for for 26 yrs in October. We have 4 adult children, a gorgeous 3yr old Grandson & our 2nd Grandchild is due in November

I have been on Methotrexate since 2007 at first with Sulphasalazine but that made me ill. To control the psoriatic arthritis 15 mg seemed to work but it didn't make a difference to my psoriasis so I have been on a steady dose of 25mg weekly for a few years now. I had to come off of it for about 5 months wen I had active Glandular Fever. I ended up in a HUGE psoriasis flare & had massive plaques all over my body & scalp, pustular psoriasis on my palms, plaques on the soles of my feet & inverse psoriasis in any fold/creased areas, it was awful.

I am on my 6th chest infection since Xmas & 3 of them have been in the last 7 weeks. They've treated me with amoxicillin & Doxycycline, the one b4 this current one I was also given 40mg steroids daily & needed 2 lots so 10 days in total, I was asked to stop taking the methotrexate whilst I was on the steroids. I felt better Monday, Tuesday & Wednesday until the evening & then I started to cough up infected mucus again so yesterday I was put on 14 days of Carithromycin.

I saw my dermatologist on Wednesday & she's unhappy I've been given steroids in case I flare. I was hoping due to the infections that id be taken off of the methotrexate but she's now asked me to go up to a stable dose of 30mg a week to try & clear up the remaining psoriasis. I was a complete mess coz I have no quality of life at all as I feel SO ill all the time!! I think mtx is doing me more harm than good now.

I think ive managed to condense all of my posts there for you, sorry its so lengthy!!

I'm really interested in your & anyone elses thoughts & opinions please.

Many, many thanks Stickywicket.x

stickywicket

Crikey, that’s a lot of history, Debbie Thanks so much for filling me in. I only wish I could do something helpful with it but I still don’t really understand :roll: Maybe that’s partly because mine’s RA not PsA and partly because I’ve never really looked into the finer details of my own disease, just swallowed the meds, had the ops and done the physio. The only time I’ve had a large hole in an x-ray was when a 20 odd yr old TKR slid out of its moorings but I still managed with it for a few more years. I’ve never had an MRI except when they thought I might have bone cancer. (I didn’t.)

I assume your rheumatologist knows what she’s talking about although I don’t understand the tendon/ligament thing. I only know that mine, in my knees, had all gone to pot by the time of my first TKRs but I don’t think they’d damaged the bone at all, only become useless in themselves. Did she actually mention osteoporosis (which is bone-thinning) or are you just assuming that? Have you actually had a bone density test? (I’m off with my questions again :oops: )

I’m sorry, I can’t help with the chest infection stuff. I wish I could :roll: I got a cold on Jan 1st that took over two months to shift. These immuno-suppresants do make us more vulnerable to such stuff. Neither do I have any experience of psoriasis as mine is RA – similar in treatment but slightly different in other ways. I do hope they can get things on a more even keel for you asap.

DebbieT

Bless ya, I did rather splurge a whole load of info out in 1 go. I'm surprised you made it thru to the end without nodding off.Lol Its very much appreciated i assure you :-)

Even just getting out of me & on to a page for others to see is helping me, hence the waffle i suspect
If others have more of an idea, great but if not ... Well you took the time out to reply to me twice how can I not fully appreciate that eh

No, I've never had a bone density test & she just said that the image of a hole was actually thinning caused by the swollen tendons n ligaments!! From wot I can gather PsA doesn't necessarily affect the joints but causes the connective tissues that run down, over & around joints to swell which rubs the bone away!! I suppose thats how the damage is done ... I thought arthritis had to affect the joints themselves but from wot she's told me its not the case ... I'm appalled at how clueless I am now :?

The actual word 'Osteoporosis' has never been mentioned to me. I'm now wondering if I've made a leap ... Could it be worn away rather than thinned perhaps ... Oh no, I'm hopeless. Sorry.

I really don't mind questions coz if I haven't got the answer to give you then I'm obviously failing myself by not asking her the right stuff so I have a better understanding!! I think I need to take some time for some research on PsA, I clearly haven't done enough!!

I'm very glad it wasn't bone cancer btw

Thanks again & take care x

DebbieT

Anyone else with advice, info, thoughts etc etc Id be truly grateful!! :oops:

I'm really open to learning.

Thank you.x

queenfan

Hi Debbie I am another one that hasn't read your posts, I pop on now & then which might sound bad & I am ashamed to admit to, I think you need to ask for a bone density scan, I was having trouble with my left hip years ago but just got on with life like we do, it's a long story but my mom had a fall in hospital which (god I have just filled up not happened for a while) any way a week later died ( not a fragile woman very strong Bless her..... any way they advised me to have a scan because she had osteoporosis, I went & asked my doctor who had no hesitation in sending me, because it runs in families & the results came back that I had it too so now take calcichew D forte tablets daily just ask your doctor Take care Sue xx

DebbieT

Hi Sue,

I'm so sorry for your loss. It's shocking it was so out of the blue like that. I'm not surprised that ure emotions bubbled to the surface!! (((Sue)))

I'll ask my GP about a bone density scan next time I see her. I don't have osteoporosis in my family but I suppose it has to start with someone!!

Thank you for sharing that with me, it's strange how so many people are suffering so much

Take care.x

DebbieT

I've spent a night filled with insomnia researching my PsA. I have a cross over of a few of them. I hope the info I've posted will help to explain the loss of bone density, I've been wording it wrongly :? It tends to do that to hands & feet but can do it to any area where tendons, ligaments & cartilage are. That is wot is happening within my hip/pelvic area!!

These are wot I have;

Symmetrical polyarthritis

This pattern is also quite common. Symmetrical means that, if a joint is affected on the right side of the body (such as a right elbow), the same joint on the left side is also often affected. Polyarthritis means that several joints become inflamed, usually including several of the smaller joints in the wrists and fingers.

Spondylitis with or without sacroiliitis

This pattern occurs in about 1 in 20 cases. 'Spondylitis' means inflammation of the joints and discs of the spine. 'Sacroiliitis' means inflammation of the joint between the lower spine (sacrum) and the pelvis. Back pain is the main symptom.




Distal interphalangeal joint predominant

This is a rare pattern where the small joints closest to the nails (distal interphalangeal joints) in the fingers and toes are mainly affected.

Arthritis mutilans

This is a rare pattern where a severe arthritis causes marked deformity to the fingers and toes.

What are the symptoms of psoriatic arthritis?

Joint symptoms

The common main symptoms are pain and stiffness of affected joints. The stiffness is usually worse first thing in the morning, or after you have been resting. The inflammation causes swelling and redness around the affected joints. Over time, in some cases, the inflammation can damage the joint. The extent of joint damage can vary from case to case. On average, the joint damage tends not to be as bad or as disabling as occurs with rheumatoid arthritis. However, joint damage can cause significant deformity and disability in some cases.

Inflammation around tendons

This is quite common. It probably occurs because the tissue which covers tendons is similar to the synovium around the joints. A common site is inflammation of the tendons of the fingers. Affected fingers may become swollen and 'sausage-shaped' if there is inflammation in the finger joints and overlying tendons at the same time. The Achilles tendon is another common site, especially where the tendon attaches to the bone. Various other tendons around the body are sometimes affected.

Many thanks x

barbara12

Hi Debbie
You know I wont be much help, but you ask for an MRI ...they show so much more up...I was shocked to read mine...it seemed worse than it was because of all the detail...
I am going to ask my GP for a bone density scan..I have never been offered one...hope you get some answers very soon x

sailrib

Hope you find out how to sort things out.

I haven't got PsA but I've been having bone density scans for about 6 years since being told I'm a coeliac.

In 2011 after being told about my feet problems, I was told my bone density has got a lot worse and was put on calcium tablets which I've been on ever since

stickywicket

Debbie, try to sleep at night and research during the day Sleep is very valuable.

I suggest you put your questions to your rheumatologist on your next visit. Personally, I always ask what I can do about any aspects of my RA (or any other illness) that will help matters but, having done all I can, I try not to worry about the future which is unpredictable for anyone.

DebbieT

Thank you both!!

Joining here has really made me aware of how little I knew about my own conditions. The research last night showing I've got a cross over of 4 out of 5 psoriatic types stunned me, especially as two are the most destructive ones ... I'd never have known, thats terrible eh?!

I'm definitely going to ask for MRI & bone density scans. Also there is a blood marker to be checked for in bloods so I'd like that done too!!

I never realised that we'd need to know so much to hopefully access better diagnostic tests & especially treatments!!

Lets hope we all get wot we need & a calcium supplement seems SO obvious & simple.

The very best of luck to you both.x

DebbieT

Thanks Stickywicket,

I have been trying to concentrate on the arthritic side of things for a while as I've been concerned with methotrexate but my Rheumatologist seems more interested in my Fibromyalgia over the past 2 years. I went from having it mildly to severely after an infection in my jaw bone. It's frustrating but all this chatting about it has definitely given me the kick up my bum to be an awful lot more inquisitive & firm

I have insomnia, thats why I was researching at night. I'd love to be in the land of nod but alas for me it rarely happens

I've taken everything you've all said on board & hopefully in the coming months I'll get answers, tests & new meds

Thank you all.x