Author Topic: Please advise  (Read 584 times)

JoannaP79

  • Newbie
  • *
  • Posts: 19
Please advise
« on: October 13, 2017, 12:24:38 AM »

After years of saying I think i have sjogrens and ' oh no you haven't', guess what, I do have it. Pursued a private lip biopsy as results on bloods always clear.
My problem is that I live in the UK and I don't know what options i have for treatment. My problem is a severe neuropathy, nld small fibre neuropathy, POTS, syncooe, certain I'm having cns symptoms and my swallowing is severely impaired.
With this in mind, any suggestion of mouth lubricants by my useless rheumatologist just won't cut it.
Can anyone in the UK with severe neuro symptoms please advise as to what options may be available?
I appreciate the options are limited but I wish to fight tooth and nail for the beat treatment.
Thanks all

Joe S.

  • Hero Member
  • *****
  • Posts: 7423
  • Fibro, Sjs, RA, CNS, Diabetes, TIA's, ADHD, ptsd
    • Chakra Force
Re: Please advise
« Reply #1 on: October 13, 2017, 07:37:44 AM »
Welcome to the forum. I am in the USA. Some of us have posted what we are taking in our signature. I have trouble with most drugs so I take supplements. I hope you find some relief. Some of us will accept private messages (PM's) so you may make friends with some of those folks in the UK.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, Goldenseal, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

SjoDry

  • Hero Member
  • *****
  • Posts: 902
  • "When you are battling with a gorilla, you don't g
    • Sjodry and Parched
Re: Please advise
« Reply #2 on: October 13, 2017, 07:57:17 AM »
UNITED KINGDOM
British Sjögren’s Syndrome Association (BSSA)
PO Box 15040
Birmingham B31 9DP
Phone: +44 (0) 121 478 0222
Website: www.bssa.uk.net
Sjodry
http://sjodry.wordpress.com/

Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

Scottietottie

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 9098
Re: Please advise
« Reply #3 on: October 13, 2017, 11:32:19 AM »
Hi  :)

Ask your GP to refer you to a neurologist. As far as rheumatologist goes - you are entitled to a second opinion. The PALS service can be helpful in these cases. I would also ask for a referral to an opthamologist.

(I'm in the UK)

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 12755
Re: Please advise
« Reply #4 on: October 13, 2017, 01:46:45 PM »
Suggestions to help with swallowing.......drink with a straw.......eat thicker foods, puddings, mashed potatoes with gravy, etc.........run meat through food grinder, blender,etc and put broth or gravy over it......food processor cooked vegies and put over thinner mashed potatoes, etc........make smoothies of potatoes, vegies and meat......do anything that you can think of in any order.

Swallowing usually works better if one looks to the right or left when swallowing. This seems to open up the throat so that there is more room for food. Hope these ideas help. I got them from swallowing therapy. Irish

JoannaP79

  • Newbie
  • *
  • Posts: 19
Re: Please advise
« Reply #5 on: October 15, 2017, 05:02:34 AM »
Thank you all for your replies! I have to be honest I feel like I need significant immune suppression. I believe I am having central nervous system issues / brain issues. I am losing feeling and strength in my face, my lungs feel full of something and burn horrendously. I have had extreme confusion and been absolutely out of it with extreme head pressure and pressure in my head like no other. I have felt like I'm on drugs and also having severe autonomic problems.
I am desperate. Please if anyone with severe neurological issues has had any relief with immune suppression please tell me what you had. I'm reading every single medical article I can find. Being sero negative I believe I will be denied rituximab. Has anyone tried something else like biologics enbrel or cellcept or Imuran? I've now joined the British sjogrens association so many thanks for the link!

MAT51

  • Hero Member
  • *****
  • Posts: 630
  • Hashimoto's, SN RA, Primary Sjogren's, SFN
Re: Please advise
« Reply #6 on: October 15, 2017, 11:35:01 AM »
Hi there. I think I replied to you on the BSSA members forum earlier. I don't use that forum much at all because there are no e-alerts and the login is such an effort! but I went there to post a question, read your post, and felt I had to reply as someone in a very similar situation myself.

Sadly the Sjögren's doctor I saw (same woman as you saw I think) only confirmed what I already knew - that Rituximab and newer drugs will only be made available to us in U.K. as part of the trickle down/ seepage effect after seropositive sufferers have been shown to improve on it first. This is same for RA but of course much more is known about seronegative RA and the seepage effect is much more established - so that those with seronegative RA can and do benefit from Biologics.

My appointment with Dr P was only last Monday so I'm still reeling about all this. I see my neurologist next month about worsening neuropathy but not expecting to get anywhere. If my CNS becomes involved then things might change for me but meanwhile I'm stuck with turning increasingly numb and losing my balance, unable to stand for more than 30 seconds without awful pain and the stinking  fatigue. Ugh - just have to hope the RA comes back. Meanwhile Azathioprine and Methotrexate did both help the neuro symptoms, as did Prednisolone, but unfortunately my body rejected them both rather strongly and max dose of Mycophenolate appears not to be doing much although my doctors all say that this is because irreversible damage has already occurred - this is loss of sensation and what I believe is PoTS.

Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

JoannaP79

  • Newbie
  • *
  • Posts: 19
Re: Please advise
« Reply #7 on: October 17, 2017, 02:17:41 PM »
Thank you so much for taking the time to reply MAT. I feel your desperation. It is not acceptable in this day and age to be left to it with a presentation like ours. Although I appreciate you are trying things out.
The suggestion made for me was plaquenil and I have had to use all my strength not to completely lose the will when that was suggested. From everything I have read that will do nothing at all for the neuropathies.
I asked Dr P the question as to whether one can ever access rituximab for sero neg outside of a clinical trial. I'm still.not sure of the answer yet but will check again as I'm keen to understand how this works. I've seen an nhs England doc which is a policy doc which does not make it entirely clear on their position administering this outside of lymphomas. I wonder if it is a hospital by hospital policy or a blanket nhs one for all the hospitals on for what this will and won't be administered for.

I've read as much as I can about treatments and they list ivig, rituximab, mtx, mmf, Imuran as the top ones. I want my own rheum to tell me which one is the best for me in my situation but I have no doubt they will not be equipped to do this and it may very well be a stab in the dark out of anybody the above - bar ivig and rituximab.

Thanks again MAT and I'm sorry you too are in this position! Hope the mmf starts doing something tonhelp

MAT51

  • Hero Member
  • *****
  • Posts: 630
  • Hashimoto's, SN RA, Primary Sjogren's, SFN
Re: Please advise
« Reply #8 on: October 17, 2017, 03:07:23 PM »
I agree but then many with MS, Parkinson’s and MND are still not helped by any kind of modifying treatment either. It seems to be that neurological conditions are very much still at the bottom of the pile in terms of research and treatments - and our form of Sjögren’s may be in same category as these I suspect.

I had my clinical letter from Dr P today and she confirmed that Rituximab is not licenced for use with Sjögren’s. She says that clinical trials are only for Ro positive sufferers but feels it is worth keeping watch on for trickle down effect which may eventually benefit us. I felt she grasped how frustrating this is but I’m guessing the big drug companies fund the research and trials so Ro positive sufferers are prioritised because of the increased Lymphoma risk - cancer attracts funding where neuro diseases don’t? My rheum and neuro have told me this would change if I had confirmed CNS or brain involvement but so far they say that my systemic issues are mostly down to existing damage rather than progressive neurological Sjögren’s. It doesn’t feel this way to me just now though! All is numbness, tingle, tinnitus and dizziness!

Here is a link to why I think/ hope Dr P is trying very hard to get people like us on the UK rheumatology map: https://academic.oup.com/rheumatology/article/55/suppl_1/i179/1795516/290-The-Burden-of-Systemic-Disease-in-Patients?searchresul
« Last Edit: October 17, 2017, 03:31:05 PM by MAT51 »
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

JoannaP79

  • Newbie
  • *
  • Posts: 19
Re: Please advise
« Reply #9 on: October 17, 2017, 04:47:00 PM »

This suggests that there will be hospital settings whom will attempt use of rituximab in sero neg if they deem the situation sure enough. With sfn like ours, it already is dire enough!!
Thank you for the link, I will have a read. It's all very depressing.
I recently discovered I had eds which is a hugely neglected condition and now feel super lucky to be diagnosed with what appears to be another hugely neglected condition.
I am keen to know how they check for CAN damage as something weird and scary is happening to me cognitively. It could be for a number of reasons related to eds but I suspect more is going in and It's related to sjogrens. I've come to the conclusion you may need to be face down in a puddle before they consider you serious enough.
I understand that big pharma completely exploit the desperation of the sick and the nhs cannot often afford the costs of these treatments.
I will take the best I can get asap to be honest but I will not accept that the best is plaquenil in my case.

JoannaP79

  • Newbie
  • *
  • Posts: 19
Re: Please advise
« Reply #10 on: October 17, 2017, 04:52:17 PM »
What an interesting article. That does sound positive in that Dr P clearly is advocating the need for appropriate treatment for us as much as the others. Just hope someone listens.

I wondered whether we would be excluded from trials because it's hard to measure impact objectively via bloods and/or because it's more difficult tobtreat our type and therefore big pharma results may be less impressive.

MAT51

  • Hero Member
  • *****
  • Posts: 630
  • Hashimoto's, SN RA, Primary Sjogren's, SFN
Re: Please advise
« Reply #11 on: October 23, 2017, 02:38:54 PM »
Yes I think it’s a mixture of both of these ie harder to treat and measure. I also think that the Ro+ NHL cancer risk makes Big Pharma sit up more than seronegative neuro symptoms will do - but that’s me being very cynical.

I’m a contradictory mix of cynical and sanguine and the latter trait has me setting some store by Dr P flagging up the neuro type just as professor Birnbaum has done for his patients at John Hopkins   - particularly when she becomes president of the BSR next year (so a friend has told me).

But I’ve lived with this neuro stuff progressing slowly for at least 7 years now and have sustained a fair amount of permanent damage to my Autonomic nervous system and small nerve fibres everywhere. The mixed blessing about SFN being advanced is that it’s usually less painful now apart from in my face and finger tips. But I have more numbness - which in turn has led to disequillibrium and lately, feeling faint, losing balance, being unable to stand up for long and dizziness, shortness of breath and severe low transit issues caused by neurogenic bowel disorder - all having a significant impact on my quality of life.

For a few years the pain of SFN had me in a terrible emotional state. However nowadays I’m more sanguine - my natural disposition I think. But at night when the pain is bad again - or during days when I’m struggling to keep my balance and manage nausea and other nasty sensory changes plus sicca - I do sometimes feel a bit bitter and sad/ cynical I admit :-\

But on the plus side I’ve just had punctal plugs inserted in my tear ducts and my eyes feel relatively moist - so I’m sanguine again for today at least!
« Last Edit: October 23, 2017, 02:48:58 PM by MAT51 »
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

WhatYouSjo

  • Full Member
  • ***
  • Posts: 123
    • What You Sjo
Re: Please advise
« Reply #12 on: October 23, 2017, 09:02:48 PM »
Unfortunately, clinical trials move slowly and doctors have very little to offer SS patients for the time being. It is even worse for seronegative patients, as it is a real uphill climb just to get a diagnosis.

You might look into helminthic therapy. There are a couple of success stories on the HT Wiki relating to neuropathy, and my own burning lips symptoms have almost entirely disappeared since I started my regimen (which is in my signature).

Seronegative male diagnosed 2014. Using generic Plaquenil, Restasis, Xiidra, low-carb diet, select supplements, helminthic therapy, LDN, and CBD. My treatment regimen

You can visit my website at http://www.whatyousjo.com

JoannaP79

  • Newbie
  • *
  • Posts: 19
Re: Please advise
« Reply #13 on: October 26, 2017, 11:21:33 AM »
Hi whatyousjo, I was reading your message and started rolling eyes ' here we go again' but then read some ncbi articles and this sounds pretty feasible!
It's a scary thought not knowing what this could so inside your body though. How do you know what you are getting when you source this stuff. That's my only worry.
I've got my prescription for plaquenil which I doubt will touch the sides but we will be reviewing in 6 weeks and will discuss the addition of something else. Think I completely realise there is hardly anything to help us with seroneg manifestations. I did read your blog which I found really interesting and was good to hear that there are some new things in clinical trial

WhatYouSjo

  • Full Member
  • ***
  • Posts: 123
    • What You Sjo
Re: Please advise
« Reply #14 on: October 26, 2017, 07:55:13 PM »
The helminthic therapy wiki has a section on the different providers, where they ship, their processes, and how well they are rated. They have all been generally vetted by the community. While the scientific literature on HT is light for Sjogren's Syndrome, there are some promising studies for other autoimmune diseases. There is an element of risk with any therapy, but I don't see HT as any riskier than Plaquenil, MTX, or biologic drugs. I myself was prescribed Plaquenil when I was diagnosed, and decided to give it 6 months before I tried another therapy. I have found Plaquenil to help with some of the joint issues, but not so much with other symptoms. The lack of approved medications for SS has forced me to explore alternate therpies; luckily some of them have proven helpful in my case.

I hope you are able to find something that helps alleviate your symptoms.
Seronegative male diagnosed 2014. Using generic Plaquenil, Restasis, Xiidra, low-carb diet, select supplements, helminthic therapy, LDN, and CBD. My treatment regimen

You can visit my website at http://www.whatyousjo.com